AUTISM NETWORK: VOL 7 ISSUE 2 ~ AUGUST 2012
WISHLIST ! • Apartment/ House/ Residence for people with autism • IPODS • IPADS for children to communicate AUGUST 2012 VOL 7 ISSUE 2 • Tablets for teaching cognitive/social skills • Computer/Video games, X Box Connect Action For Autism is a registered, non-profit, national parent • Colour coded keyboards •Gymballs organisation. Autism Network is published by Action For Autism •Music systems (CD/MP3 players) to provide information on education, therapy, care, and to provide • Adapted mouse • Head phones •Board interaction for families and professionals across the country. games • Microwave for cooking skills Autism Network is a forum for expressing diverse opinions. • Washing Machine for independent skills Action For Autism does not hold itself responsible for opinions training unit • Computers that can expressed by individual writers. Publication of any information support graphics • Digital Video Camera does not mean support of Action For Autism. to record children's progress • Laptop Autism Network does not accept advertisements. Expenses are met & LCD projector for parent trainings through memberships, donations and sponsorships, from our readers, •Trampoline • Light & sound making toys friends and well wishers. This journal is for free distribution. • Lego: large & small blocks
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Website: http://www.autism-india.org C O N T E N T S Helpline Email: [email protected] Page One 1 The Self in Autism 2 Token Economy 8 Cover Illustration Alternative Therapies ‘Spiderman' by Pranav Gupta, 8th Standard, for Autism cont. (Hindi) 12 Springdales School. Dhala Kuan, Delhi Helpline 16 Upcoming Workshops at a Glance 17 AUTISM NETWORK: VOL 7 ISSUE 2 ~ AUGUST 2012 PAGE ONE
On 30 June last year the committee chaired by Dr Sudha heterogenous. And perhaps no disability highlights this Kaul to draft a new law to replace the Persons with heterogeneity as sharply as Autism does. Disabilities Act submitted the final draft of the Rights of Persons with Disabilities Bill (RPDB) to the Ministry. There In this issue we carry an article that addresses a critical is still no information as to when the law will finally be area, an area in which persons with Autism appear to placed before Parliament. develop markedly differently from the non-autistic. Professionals, the wider disability sector, and even parents In the meantime, half-way through and the year is turning themselves often do not fathom the pervasive nature of out to be one of cautious optimism. In March this year Autism. For instance, the general perception is that all came the announcement of a Department of Disability persons with Autism are self absorbed and tuned to their Affairs (DDA) under the Ministry of Social Justice and own selves. Whereas the reality is that people with Autism Empowerment. Within two months a Central Government have difficulty in reflecting upon their own actions, thoughts notification announced the creation of the DDA, under the and emotions, which directly impact the way they learn, and initiative of the Minister Shri Mukul Wasnik. And a couple what they learn. They often have a reduced sense of self, of days ago came the announcement of the appointment which often impacts on their ability to learn in a group as of Sm Stuti Kackar as Secretary of the division. well as learn from the linear non-experiential manner in which teaching is conducted in our school classrooms. The fulfilling of the commitment towards a separate Most ‘experts’ in the disability sector fail to grasp this, ministry for disability has been long overdue; this quick and therefore cannot appreciate that inclusive classrooms succession of events is perhaps a sign of better times. often end up being places where persons with Autism are We hope this positive development which has come about the most excluded. And that children with Autism who are with the efforts of numerous activist groups in the country enabled to lead inclusive adult lives often do so due to the working at various levels, will go beyond the superficial and special needs education that they receive outside so-called at last give our community a voice and a presence. inclusive classrooms.
With the setting up of the DDA it is time that the disability Even as we go to press, ‘experts’ in Autism are still locked community try and addresses differences within our ranks, over the changing definition of Autism. The proposed difficult though it may DSM-V revisions have seem at times. Much of sparked a debate over these differences are Recent Engagements the inclusion of all the driven by perceptions PDDs under the head of disability. These In April 2012, Merry Barua Director AFA was invited to present of Autism Spectrum perceptions are often on Autism in India at the Autism Speaks – GAPH First Annual Disorders, and the based on a focus of Conference of the Advocacy Leadership Network in New York. possibility of those on what one experiences She later spoke on Education for Persons with Special Needs in the able end of the personally, and what one International Settings at the College at Old Westbury, SUNY. spectrum falling through is exposed to. This in the cracks and losing turn contributes to the In May 2012, Nidhi Singhal Director Research and Trainings access to resources mistaken belief in the at AFA made a presentation on Ethical Considerations in and services that they homogeneity of Conducting Research in Low Resource Countries at the need. disability experiences. International Meeting For Autism Research Conference in Much of the discourse Toronto. Whether one shares this on disability, divisive or fear or not, this concern otherwise, is driven by further illustrates the In August 2012, Merry Barua was invited to speak on this unitary view of complexity of a condition Empowering Mothers to Increase Reach in Low Resourced disability. that is often attempted Settings as well as on Perspectives in Including Children with to be glossed over by a Autism in Mainstream Classrooms at the ICare4Autism homogenization of the The reality is that International Autism Conference in Jerusalem. ‘disability’ is extremely disability paradigm.
1 AUTISM NETWORK: VOL 7 ISSUE 2 ~ AUGUST 2012 The Self in Autism Rachel Brezis
Historically, researchers and clinicians assumed that In what ways can an autistic person’s self be since persons with autism are often oblivious to their different? surroundings, they must be deeply self-absorbed. In fact, Ulrich Neisser, a social psychologist, expanded on when Kanner published his first description of children James’ notion of the ‘I’ and the ‘me’, and divided the with autism, he picked the term ‘autism’ because it is self into five forms of self-awareness. As research on the derived from the Greek word ‘autos’, meaning ‘self’. For self in autism is unfolding, it is useful to follow Neisser’s many decades, researchers focused on these children’s categories to better understand where impairments in difficulties in interpersonal relations, theory of mind, and self-awareness emerge in autism1. repetitive behaviors – without questioning the initial assumptions regarding the self in autism. Recent studies, THE first two categories in Neisser’s model are more however, are beginning to show that persons with autism implicit forms of self-awareness, corresponding to in fact have various impairments in their sense of self – James’ ‘I’: and that these in turn can have pervasive consequences in their daily lives. In what way is the self in autism a) The ecological self different? How does it affect their ability to remember, to The ecological self is our ability to perceive of our own plan, and to empathize? And what can we do to help? body and the effects of its actions in space: ‘I’ am the person here in this place, engaged in this particular IN this piece, I’ll begin by reviewing the different activity. Having an ecological self means recognizing the behavioral ways in which the self in autism may manifest boundaries of my body – and distinguishing between my differently, continue by looking at some of the different body, other bodies, and the environment. At a brain structures that would underlie these differences, and rudimentary level, newborn babies have the ability to conclude with some practical recommendations for distinguish between their own and others’ bodies: if you helping children and adults with autism develop a take a baby’s hand and touch it to their cheek, the baby stronger and clearer sense of self. would be less likely to turn and suck than if you touched your own hand to their cheek, as if the baby ‘knows’ What is the self? whose hand was touching them. The self has been a central topic of investigation for many centuries, across different cultures and religions – and ANOTHER important aspect of the ecological self is our different definitions of the self abound. On an intuitive sense of ‘agency’, our intuitive ability to distinguish level, the self refers to the unitary core we all possess, our between changes made by the environment, and changes essential being – which makes us distinct from others. that we ourselves have made. On a broader level, it William James, one of the founders of psychology, made involves perceiving ourselves as the center of control for an important distinction between the self that simply acts our own actions, and recognizing our responsibility for and experiences (the ‘I’) and the self that perceives the particular changes in the environment. Newborns can acting self (the ‘me’). The ‘I’ is the more basic and learn to suck on a pacifier at a specific rate in order to see implicit layer of the self, including an intuitive awareness or hear a particular sound, such as their mothers’ voice – of our body in space, our self in relation to others. The indicating that they can control their behavior to change ‘me’ is a more explicit, reflexive layer that emerges later the environment. in development, and includes our beliefs about ourselves, and an understanding that our personal identity has Do persons with autism have an ecological sense of self? continuity over time. It seems that at a basic level, children with autism are
1The following discussion is based on Lind and Bowler (2008) Episodic memory and autonoetic consciousness in autistic spectrum disorders: The roles of self-awareness, representational abilities and temporal cognition. In: D. Bowler and J. Boucher (eds.) Memory in Autism. Cambridge: Cambridge University Press. pp. 166-187.
2 AUTISM NETWORK: VOL 7 ISSUE 2 ~ AUGUST 2012 capable of moving their bodies in relation to the physical interaction is not responsive and interactive (for instance, environment without much difficulty. A recent study of if an infant is observing a video-recording of their high-functioning adults with autism by Williams and mother), the infant loses interest and becomes distressed. Happe2 has also demonstrated that persons with autism These behaviors show that typical infants have a clear are capable of identifying which of a number of moving awareness of themselves in relation to others. By dots on a screen was being moved by their own hand on participating in these interactions, and observing the the computer’s mouse – meaning they have an intuitive interlocutor’s reactions to their expressive actions, they sense of agency. begin to acquire a sense of agency in directing social actions. HOWEVER, it is unclear whether this ability would extend to persons with low-functioning autism, and IN autism, many of these social behaviors are whether more subtle impairments in the ecological self compromised from early development, and thus children would appear. For instance, we know that compared to with autism have difficulty acquiring an interpersonal the non-autistic, persons with autism have many more self-awareness. Some children with autism show sensory issues – such as an over-sensitivity or under- indifference to other people, treating them as objects sensitivity to sounds, lights, touch and heat. As Temple rather than as beings with whom they can interact. Even in Grandin recounts: high-functioning children, conversations tend to be stereotyped and lacking in reciprocity. For example, “My hearing is like having a sound amplifier set on Therese Joliffe, an adult with high-functioning autism maximum loudness… I have two choices: (1) I turn my recounts: ears on and get deluged with sound, or (2) shut my ears off… I can’t modulate incoming auditory stimulation.” “When I was very young I can remember that speech Persons with autism may be highly irritated by the touch seemed to be of no more significance than any other of a new garment, but unaffected by painful temperatures sound… It was ages before I realized that people speaking or pricks. Furthermore, many persons with autism have might be demanding my attention…” difficulties with gait, balance and coordination, Without the early ability to engage in social interaction, suggesting that they have some impairments in persons with autism will have a limited sense of negotiating their physical environment. Given these interpersonal self; and this, in turn, will make it difficult differences in sensory and motor functioning, it is for them to acquire more sophisticated means of possible that rather than perceiving their bodies as interaction and interpersonal understanding. bounded and controllable, they would instead perceive of the relation between their bodies and the world as much THE following 3 categories of the self as described by more permeable and blurred. Such differences in Neisser appear later in development, and pertain to our perceptual experiences may have fundamental more explicit self-awareness (the ‘me’): consequences for the way in which persons with autism perceive their body in relation to their environment, and c) The private self their selves in relation to others. The private self emerges when we begin to become aware that some of our experiences are not directly shared with b) The interpersonal self other people: ‘I am, in principle, the only person who can The interpersonal self is our understanding of ourselves in feel this unique and particular feeling’. The private self is relation to others in our social environment: ‘I am the directly related to theory of mind: between the ages of 3 person who is engaged, here, in this particular human to 5, typically developing children begin to understand interchange’. In typical development, interpersonal self- that their desires, intentions and beliefs are different from awareness is acquired through early social interaction, others’, that other people have a different ‘mind’. At the imitation, turn-taking and so on. For instance, typical same time, they begin to reflect on their own experiences, infants engage in non-verbal ‘conversations’ with their understanding that some of these are private, and cannot caregivers, that involve turn-taking and imitation of be perceived by others. With time, they become aware not vocal, facial and gestural expressions. When the just of having an experience, but that they are having it.
2 Williams and Happe (2009) Pre-Conceptual Aspects of Self-Awareness in Autism Spectrum Disorder: The Case of Action- Monitoring Journal of Autism and Developmental Disorders. pp s39:251-259
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AS we know, persons with autism have difficulty with see the brown of the water and the color of the theory of mind, and thus, they are also significantly clothing the teacher and children were impaired in understanding their own mental states. For wearing. instance, persons with autism have difficulty recognizing their own emotions – even when they exhibit an WHAT is striking about these examples, beyond the great appropriate physiological response to fear or joy, they focus on details and visual imagery, is the fact that they do have difficulty articulating their feeling.3 not report on their emotions and bodily sensations (this is true of other thought samples surveyed as well). Further, WHAT do persons with autism think about? An Robert’s account does not provide any interpersonal interesting glimpse into the inner world of persons with reflection on other humans; and while in Nelson’s scene, autism was provided by Francesca Happe and Uta Frith, he recalls the memory of his teacher and classmates, those who asked several adults with Asperger’s at different are quickly glossed over in favor of the engrossing image points in their days to pause and report on their thoughts. on the TV. The first indication of a reduced sense of self was provided in that most adults interviewed could not THESE thought samples, as well as more calculated comprehend the task – reporting on their present action experiments, suggest that the private self of persons with (e.g., unscrewing a bottle), rather than the ‘mental autism may be fundamentally altered from that of typically picture’ of their current experience. That said, two of the developing persons. We will return to these experiences adults interviewed were capable of reporting their later in this article, when examining the possible brain thoughts after several days. The following are examples bases underlying the experience of self in autism. of their thoughts: d) The conceptual self Robert was on the train to London and had Conceptual self-awareness arises when the self becomes just seen from the train window a suspicious the object, rather than merely the acting subject of thought. looking car parked or abandoned on the road In other words, we begin to reflect on our own behaviors, near the track. He was trying to memorize and begin to develop a set of beliefs about ourselves. In where the car was so that he could come back typical development, conceptual self-awareness emerges and find it when he got off the train, in order only in the second year of life – and is reflected in the to get its registration number (which he did in development of self-conscious emotions (such as fact later succeed in doing). The image of the embarrassment and pride), personal pronoun use, and car Robert was seeing was in accurate color, explicit beliefs about the self. just behind a low wall, with some garages in the background behind it; the parts of the car One of the ways in which psychologists have examined obscured by the wall were not seen. the emergence of conceptual self-awareness is through the Mirror Self-Recognition task. As the child is playing with Nelson was watching a TV nature an adult, the adult covertly smears their face with color, as documentary about water boatmen [a type of they are pretending to wipe the child’s face. The insect] on a pond. He was seeing on the experimenters then observe the child’s reaction to their screen how the insects move, from left to right own reflection. At 18 months, toddlers typically touch the across the screen, and he was also color mark on their face – indicating that they have an ‘picturising’ a classroom scene from when he emerging self-concept. At 24 months, toddlers also begin was younger, when he had watched a similar to show blushing, shy smiling and gaze aversion – which TV programme. In the image, he could see the are indicative of the emergence of self-conscious emotions TV, a group of children sitting in front of it such as embarrassment. on the floor, and the teacher standing behind the children. The perspective was from the WHEN children with autism are given the Mirror Self- back of the teacher, over her shoulder, past Recognition task they typically do touch their hand to the the group of children, towards the TV. The mark on their face at the appropriate mental age – image was in color and movement: he could indicating that they have a basic self-concept of their
3 It is interesting to note that different psychiatric disorders, such as depression, are characterized by an over-rumination on the private self and its experiences.
4 AUTISM NETWORK: VOL 7 ISSUE 2 ~ AUGUST 2012 physical appearance. However, children with autism self in emotional and social terms, adolescents & children don’t show any of the self-conscious emotions that with autism focus on their physical or external traits. accompany mirror self-recognition in typical toddlers. More broadly, while persons with autism have a clear e) The temporally extended self experience of basic emotions such as joy, fear, anger and The final layer in Neisser’s categorization of the self sadness, they have difficulty experiencing and expressing involves our awareness that the self continues to exist self-conscious emotions such as pride and through time: ‘I am the person who had certain specific embarrassment, which require an understanding of how experiences, who regularly engages in certain specific and others perceive you. familiar routines.’ One simple way of examining this temporal awareness is through the Delayed Self- ANOTHER marker of the conceptual self in typical Recognition task: after the experimenter covertly colors a development is the use of personal pronouns, such as ‘I’ child’s face, the child and the experimenter watch a video and ‘me’. The unique property of personal pronouns is of the interaction. While typical children automatically that their meaning shifts according to who is speaking: reach their hand to their faces, recognizing that the child e.g., parents addressing their child always say ‘you’, but in the video and themselves are the same, autistic children typical toddlers learn to call themselves ‘me’. Thus, their need to be prompted to recognize this identity. This proper acquisition indicates that the child has a difficulty in recognizing their self as continuous in time developed self-concept, and that he or she can represent may have fundamental consequences for memory and themselves and others as distinct individuals. In autism, future planning, as we shall see below. pronoun reversal is very common, and even serves as a diagnostic marker for verbal individuals. For instance, TO summarize our discussion thus far, persons with rather than saying ‘I want ice-cream’, Ansh might say autism have impairments at various levels of self- ‘you want ice-cream’ or ‘Ansh wants ice-cream’. Ansh’s awareness: beginning with the most basic, physical sense confusion indicates that he has difficulty perceiving of of their body, and continuing on to more abstract himself in relation to others – his self-concept remains awareness of their self as a distinct entity with feelings and fixed in others’ ways of addressing him, rather than beliefs that has continuity over time. Not surprisingly, becoming a personal ‘I’ or ‘me’. persons with autism have the most difficulty with interpersonal aspects of the self: viewing themselves IMPORTANTLY, the conceptual self continues to through others’ eyes, and understanding that their own develop over time. As we grow, we gradually acquire a emotions and beliefs are not visible to others. set of beliefs about our self, our personal characteristics, features and traits. As children, our self-concept consists THUS we see that rather than being self-absorbed and self- mainly of beliefs about physical traits and abilities (e.g., focused, as early observers of autism had assumed, we ‘I have brown hair’; ‘I can skip’). Later, our self-concept now know that persons with autism have as much extends to psychological and social traits that can be difficulty understanding themselves as understanding more interpersonal in nature (e.g., ‘I’m shy’; ‘I have lots others. of friends’). Why do people with autism have a reduced sense of IN my own research, I asked children and adolescents self? with autism in Los Angeles how they would describe At the biological level, several brain-imaging (MRI) themselves. Many of the children had difficulty studies of persons with autism have begun to uncover the answering the question, saying “I don’t know,” “I don’t possible reasons for a reduced self-awareness. First, understand,” or simply changing the topic. Those who persons with autism have reduced connectivity between did describe themselves, used more physical the limbic regions – which are responsible for emotional characteristics than their typically developing peers, such response – and the frontal cortex – which is where self- as: “I’m from Mexico”, “I’m handsome and charming”, processing occurs. This may explain why persons with “I have a mouth, and nose, and arms and legs.” In autism may have a physical emotional response, but have contrast, typically developing children and adolescents difficulty articulating their emotion, and remembering the gave more psychological descriptions of themselves, emotional experience later on. such as: “I try to be friendly,” “I’m a good listener,” “Sometimes I get mad”. As we can see, while typical BOTH the frontal cortex and the limbic regions are part of children and adolescents spontaneously describe their a larger network called the ‘default network’, which
5 AUTISM NETWORK: VOL 7 ISSUE 2 ~ AUGUST 2012 overlaps with self- and other-processing. When typically at events they had experienced, but not the emotional or developing persons and are not given any particular social aspects of the situation. For example, Jordan, an instructions, their brains automatically activate these 11-year-old boy, told me: regions of the ‘default network’, suggesting that when our “On my last birthday I went… to a movie. It was nice. minds are left to wander, we typically begin to think about Then I went to a restaurant and ate some burgers. They ourselves and others. Individuals with autism, however, had lettuce and tomato inside.” did not activate this ‘default network’ automatically – only when told to do so. This relates to the ‘thought IN contrast, when talking about his favorite fictional samples’ provided by Frith and Happe, above: even when character, Meggie, Jordan was capable of giving more told to explicitly reflect on their thoughts, adults with elaborate descriptions of his mental states: autism focused on visual imagery of objects, rather than “When Meggie was little he didn’t know his mom... He persons and emotions. A further manifestation of this wanted to see his father, but he didn’t know where he phenomenon is that persons with autism apparently do was.” not have as many dreams as typically developing persons (as manifest by Rapid-Eye Movement, or REM, during IN a way, it was easier for these children with autism to sleep, and self-report at wake-up). Thus, it seems that relate to a fictional character, whose story is pre-fixed, persons with autism do not spontaneously reflect about than to construct their own narrative about themselves. themselves and others when their mind wanders. Since Using their ability to relate to fictional characters, we autism is a neurobiological condition that begins at birth, may help high-functioning persons with autism better the fact that children with autism do not spontaneously understand themselves. reflect about themselves in relation to others when their mind wanders, may mean that they will lack the REMEMBERING who you are and what you’ve done in experiential ‘glue’ that gives us our experience of self. the past, has a direct effect on your ability to plan ahead. We know that persons with autism have significant What are the consequences of reduced self-awareness? difficulties in decision-making and future planning. For Having a sense of self is directly related to three primary instance, one high-functioning adult with autism told me human abilities: our ability to remember events in our that every time his mother would ask him what he wants past, our ability to plan our actions in the future, and our for dinner, he’d role dice to decide. If he had had a ability to empathize with others. stronger memory of liking dal makhni in the past, or perhaps even an identity that he’s a ‘saag paneer kind of MULTIPLE studies of memory in autism have shown guy,’ it would be easier for him to decide what he wants that while persons with autism have a good memory for to eat tonight. semantic facts, such as word lists and train tables, they have difficulty remembering their own events. Why is FINALLY, as mentioned above, a reduced sense of self that? Perhaps it is because children with autism don’t would make it difficult for a person with autism to have a rich, elaborated sense of self, events in the world understand others. If you don’t have a good memory for that occur to them wouldn’t necessarily be worthy of how it felt when you were happy, sad, or in pain, it would remembering. In one experiment, researchers took a be difficult for you to show empathy towards others in group of autistic and non-autistic children on a walk. the same state. In addition, if you don’t have a clear When they returned, they asked the kids what they understanding that your emotions are different from remembered. The typical kids remembered more actions others – it would be difficult for you to conceive of that they had performed (e.g., I petted the horse, I placed someone being sad when at that moment you happen to a letter in the mailbox), than actions that the other kids be happy. Parents of children with autism are often had performed. But children with autism remembered frustrated by their children’s lack of empathy – but just as many actions that they had performed as others perhaps their problem is a more fundamental one, a had performed. It was as though their self simply wasn’t difficulty in self-awareness? as salient, and events that happened to them didn’t get ‘tagged’ with that special personal connection. FOR all these reasons, it is important to work with persons with autism to increase their self-awareness. This In my own research on memory in autism, I found that will help them develop a stronger identity and memory high-functioning children and adolescents with autism for themselves, help them make their own decisions, and would often report the facts and physical objects present ultimately, help them better understand others.
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How to increase a person with autism’s sense of self? IT is also important to encourage individuals with autism Going back to Neisser’s layers of self-awareness, we can to make their choices – in how they’d like to decorate see that an autistic child’s self-awareness may be their environment, what they’d like to wear, and what improved upon on several levels. Arnold Miller, a they’d like to do. This will enhance their sense of agency, therapist who works with children with autism, suggests and make them more attuned to the physical and social several techniques. consequences of their behaviors. With time, children’s identities will become stronger, their thoughts and FIRST, on the physical, ecological, level – it is important feelings will be clearer and more intense, and they may to increase children’s awareness of their own bodies, be able to better recall the past and project into the future. their sense of propriception. Some techniques include: rough and tumble play, tickling, face touching, elevation Summary and Conclusions (activities on raised platforms), and pressure or weight While early research on autism assumed that persons related activities (pushing, pulling, weight-bearing). All with autism are self-absorbed and therefore have a rich of these activities help children ‘feel' their bodies, and sense of self, more recent work is revealing that persons gain more awareness of what they are ‘doing', and how with autism have a reduced sense of self. In fact, the that affects the world. Since children with autism may ability to understand self and others co-develops: such not seek physical activity on their own, it is important to that without a rudimentary physical and interpersonal expose them to a variety of novel activities. The more sense of self, persons with autism find it difficult to physical experiences a child encounters, the easier it will engage with their surroundings. And their difficulty be for them to develop a generalization of themselves as engaging in interpersonal exchanges in turn makes it ‘doers', and they can begin to form a sense of self as difficult for them to develop a rich sense of self. someone who can do many different, specific things. IMPAIRMENTS in self-understanding in autism can be AS children become more aware of their bodies and what manifest at different levels: from a sensory difficulty they can do, it becomes easier to teach them about what understanding the boundaries of one’s physical body in other persons are doing. This can be taught through space, to more complex abilities to understand that certain social games such as hide and seek, tag, musical chairs aspects of the self (such as thoughts and emotions) are and jump rope, that highlight for the child how his private, and that the self is an entity that continues actions relate to others. This will increase the child’s through time. While typically developing persons turn awareness of themselves in the context of other persons spontaneously to self- and other-reflection when their (the interpersonal self), and may also lead to stronger mind ‘wanders’, persons with autism will only do so with emotional experiences (the private self) and more explicit instruction – and even then, their thoughts are communication. likely to focus on visual details, rather than emotional and social perceptions. This pervasive difficulty from birth has IN order to increase a child’s conceptual self-awareness, important consequences – affecting a person with autism’s and their sense of self-continuity over time, we can help ability to remember personal events, imagine a future them by highlighting the traits that make them special. activity, and empathize with another person’s emotions. Since persons with autism may not be able to do so on In order to help persons with autism gain a better self- their own, it is important to teach them to express who understanding, we can begin with simple sensory they are – what they want, need, and feel – in whatever techniques to enhance their physical sense of self, and way they can. Some strategies include: covering their gradually add activities that enhance their interpersonal walls with pictures of themselves doing a variety of and conceptual sense of self. Ultimately, these activities activities with a variety of people; writing a list of traits, will serve to strengthen their personal identity, and reading and acting them out; giving them chores you rely empower them to assert their agency in the world. on them doing; and pointing out emotions as they are experienced, till the individual can express the emotions Rachel Brezis, PhD holds a postdoctoral fellowship from the themselves. High-functioning children may be taught to Foundation for Psychocultural Research at the University of reflect on their own thoughts emotions by harnessing California, Los Angeles (UCLA). She is currently their special interest in a fictional character – first coordinating the research collaboration between UCLA and teaching them to recognize the emotions in the story they Action For Autism (AFA), and is working with AFA to read or see, and then relating those emotions to real-life conduct an evaluation of the Parent-Child Training Program, experiences as they occur. and a study on adults with autism in India.
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the month he collects all his earned pay (all the bits of Token Economy paper called money) which he can how exchange for whatever he desires. Likewise a kid does the work which Sudhanshu Grover we want from him, and in exchange he earns tokens. When he has accumulated a predetermined number of tokens he can then exchange them for items or activities Very early in its history, human kind had developed the he desires. barter system. You had grains that I needed to satisfy my hunger. I had animal skins which you needed to wrap SO, a token economy is a system in which an individual around you to ward off the elements. I exchanged some earns tokens for doing the work we want from him, or in of my grain for some of your animal skins. We both got other words for engaging in or displaying desired what we desired. But soon people realised that barters behaviours or ‘targeted behaviours’. Once he has could be problematic. I had a lot of skins which no one collected a predetermined number of tokens he can trade needed, so I used them up for various things. Now I need them for an item or activity that he desires, which is the your grain but have no skins to give away. That is how ‘backup reinforcer’. Token economies are a type of neutral ‘tokens’ came into being. The term ‘token’ secondary or conditioned reinforcement since, as already suggests something that is a sign or a symbol for mentioned, tokens begin as essentially neutral, of little something else. These tokens were something that could significance in and of themselves. However, as the be bartered for anything. tokens become increasingly associated with the reinforcers for which they are exchanged, the tokens THE earliest use of ‘tokens’ can be traced to clay coins themselves can become reinforcing, making the learning that first appeared in human history in the shift from more motivating. Just like our money! nomadic hunter-gather societies to agricultural societies, and with the progress from simple barter to more Fig. 1: The basic chain of Token Economy complex economies. At different times and in different Child has no tokens Child is given tokens climes, this neutral ‘token’ took the form of cowrie & no access to desirable for engaging in these shells, bits of engraved stone, and bits of metal, and items/ activities behaviours paper, which we now know as money. This neutral item had no intrinsic value of its own; the value was derived Child engages in Child trades tokens from the power of exchange, the power to access things desirable/ target' for backup reinforcers that one desired. After all, there is nothing particularly behaviours (desirable items/ activities) motivating about bits of paper. However, because we can exchange these bits of paper to buy food, housing, What can be used as tokens? entertainment, etc, these bits of paper we call money is When we want to use a ‘token economy’ in helping extremely reinforcing, and we are willing to do a lot of children learn, in teaching and/or strengthening work to obtain them. behaviours, we can use a range of items as tokens. However these must be things that are portable, and easy THIS use of money is what is also known as ‘token to dispense when the target behaviour occurs. Tokens can economy’, and is probably the token economy system be objects such as buttons, printed cards with smiley that is the most well known. However, an area where faces, fake money or marbles. They can even be a ‘non- another variation of the token economy system is widely object' such as a tick on a sheet of paper, a hole punched used is in teaching children, and especially children with in a card, or a picture or design stamped onto a card developmental disabilities. (Foxx, 1998).
How does a Token Economy work? TOKENS can also be iconic, using images of the targeted Based on the principle of providing support for positive behavior. For example, if a child were working on being behavior, it works in much the same way that money quiet, one might use a token system where he earned works, except at a very simplified level. So the shop pictures of a student with his finger on his lips. These assistant works hard the whole month and knows that for tokens are then exchanged for a backup reinforcer. every day he works he is accumulating bits of paper (which is the token called money) and every day he does TOKENS could also be representative of the backup not work he does not accumulate any. Then at the end of reinforcer, for instance using pictures of what would be
8 AUTISM NETWORK: VOL 7 ISSUE 2 ~ AUGUST 2012 delivered after the occurrence of the target behavior. The board after child earns one token ‘Reinforcement puzzles’ would be an example of these and are a creative way to implement a token economy system. So say, the child in question enjoys working on the computer, and that is his back up reinforcer, one could use a photograph/picture of the computer. Initially, the photograph/picture is cut up into a two- The board after child earns two tokens piece ‘puzzle’. The child learns that he has to earn each piece of this ‘puzzle’ individually and complete the ‘puzzle’ of the computer in order to receive the favoured reinforcement, which in this case is time on the computer. The completed picture of the computer serves The board after child earns three tokens as a visual cue to the individual of his success. As the child gets more proficient with the use of the token economy, and is able to work for longer periods, the number of pieces that make up the ‘reinforcement puzzle’ can be increased by simply cutting the photograph/picture up into more pieces. The target behaviour A token economy can be used to address any target For a token system to work effectively, it should provide behaviour that is socially significant or meaningful for clear visual representation of how much the child has the individual. This could be a new skill that one is already accomplished, and how much more he needs to targeting for the child such as when Rocky is learning the accomplish, before he can get access to the new skill of identifying the colour ‘red’. When asked to reinforcement. One of the ways to do this is by using a “Touch red”, after being presented with red, blue, yellow strip of board with defined spots on which the child colour cards, Rocky could earn a token every time he affixes the tokens that he earns. The number of discrete touches the red colour card independently. A token spots would be predetermined depending on the number economy can also be used to maintain or strengthen a of tokens that the child needs to earn before he can skill/behaviour that the child already has. For instance, exchange them for the backup reinforcer. The discrete Reena can thread 10 beads independently. To maintain spots on the token board provides a visual cue that helps the behaviour of her threading 10 beads, Reena can be the child predict exactly how much work he needs to do given a token for threading ten beads. before he gets the reinforcement. ADDITIONALLY, to increase the number of beads that IN Fig 2, given below, it has been determined that the Reena can thread independently, she can be given tokens child has to earn three ‘smileys’ which are his tokens. for threading additional beads. His token board has three distinct spots where he has to affix the tokens that he earns. As the child earns each A target behaviour can include social skills, self help token, he can fix it on one of the blank spots. When he skills, academic skills, vocational skills and so on. fixes one smiley the token board shows him that he has to still earn two more. When he earns a second smiley he THE token economy can also be used to encourage places it on the next blank spot and can see that he needs positive behaviours and thereby reduce challenging to earn one more token. When he places the third smiley behaviours. For instance, Shil vocalises very loudly in token on the token board, the child knows that he can class and this disturbs all his classmates. The now get his backup reinforcer. ‘challenging behaviour’ in this case is the loud vocalising, and the target behaviour for Shil would be Fig 2: The Token Board ‘not vocalising’. So, if one were to use a token economy here, one would first determine Shil’s motivator which The token board at the start of work would be his backup reinforcer. His teacher would then determine how many tokens Shil would have to earn in order to have access to his back up reinforcer. Having thus set up the token economy, Shil would then earn tokens at the times at which he is not vocalising; or in
9 AUTISM NETWORK: VOL 7 ISSUE 2 ~ AUGUST 2012 other words he earns tokens when not engaging in the behavior; he earns a token which he can then challenging behaviour. Delivering tokens when the immediately exchange for the backup reinforcer. Once individual is not engaging in the ‘challenging behaviour’ the individual makes the connection between the delivery strengthens the occurrence of the alternative behaviour of token and the consequent earning of the reinforcer and that we would want to encourage. In Shil’s case the we see the target behavior beginning to occur with more alternative behaviour is that of his keeping quiet in class. regularity, the number of tokens that the child needs to earn in order to get his backup reinforcer can slowly be ONCE a target behaviour has been identified, it is increased. important to define the behaviour in specific and observable terms so that it is clear to both the teacher and IN this manner one can move from a situation of the child what exactly is expected of him. For example, immediate delivery of the backup reinforcer, to a point the target behaviour for Gyan could be that in a period of where the delivery of the backup reinforcer is ten minutes he will do at least four out of a given five progressively delayed, such that tokens are earned and addition sums correctly. On the other hand, the target exchanged for the desired reinforcement after an behaviour for Nitin could be that whenever presented extended period of time. with soap during ‘hand wash’ time, Nitin will be able to wash his hands independently. LET’S say that the behaviour that is being targeted for Anoop is making eye contact with the teacher for at least The Backup Reinforcer three seconds, and his backup reinforcer is tickles from The backup reinforcer is the item or activity that the the teacher. In the initial stages of implementing the individual trades or exchanges his tokens for; and this token economy, Anoop would receive one token every defines the effectiveness of a token economy. Therefore single time he made eye contact for three seconds; or in it is important that the backup reinforcers are chosen other words engaged in the target behaviour. This token specifically, keeping the individual’s preferences in would immediately be traded for tickles, ie the backup mind. A backup reinforcer can be an activity, item or reinforcer, from the teacher. Later, as Anoop’s behaviour privilege that the individual likes and enjoys. They may of looking for three seconds at the teacher happened with be consumables, toys, games, a magazine, painting greater frequency, he learnt to wait longer and longer activities, TV time, free time, listening to music, an before receiving his backup reinforcer of tickles. He had outing and so on. When working with a simple token to accumulate a total of ten tokens before he could get system the individual can choose from an array of access to the backup reinforcer. available reinforcers the item or activity that he would like to be working towards. With more complex token ONCE a child is comfortable with the delay in systems one may have a ‘menu’ of reinforcements posted reinforcement, one can design token systems that may along with the ‘prices’ of various items for example, encompass an entire day or week instead of just one bubbles might cost five tokens; a video cost 16 tokens; a particular work session. For example, in a classroom, trip to McDonald’s 50 tokens. individual students and often the class as a whole are awarded tokens for ‘being good’. When the student or the Following the steps whole class accumulates a certain number of tokens, they Whilst using a token economy, the first steps would be to then receive a ‘prize’ or get to do a special activity which decide upon: 1) the target behaviour viz the desirable is their motivator. As token systems become complex behaviour to be taught or the behaviour to be and sophisticated, there is often a ‘menu’ of strengthened; 2) the backup reinforcer viz the activity or reinforcements that are posted, along with the ‘prices’ in item as well as the quantity that will be delivered in tokens, and a specified time place for exchanging the exchange for the tokens; 3) the type of tokens that will be tokens for backup reinforcers. used. IT is vital to remember to always pair verbal praise with THE next step would be to establish a schedule of the presentation of the token. Giving a “Good sitting!” or reinforcement ie to determine the number of tokens that “Great reading!” will remind the child why he is getting would need to be exchanged for access to the backup the token. Also when tokens have been established as reinforcer. Initially the child may have to earn just one secondary reinforcers, they can in turn help establish token to get access to his backup reinforcer. This would social praise as a reinforcer. When that happens it is then mean that each time the child achieves the target easier to fade the tokens over time and ultimately the
10 AUTISM NETWORK: VOL 7 ISSUE 2 ~ AUGUST 2012 person will be naturally reinforced through the social blowing bubbles after every correct answer. Using tokens interaction with the adult. can be less obtrusive in the classroom. They also provide the same reinforcement for individuals who have unique Advantages of a Token Economy preferences in back-up reinforcers. So in a classroom, The use of tokens as a means of delivering reinforcement irrespective of what each child likes, each child essentially through the individual exchanging them for back-up gets the same token. Therefore tokens are easy for the reinforcers has a number of advantages. teacher to dispense and easy for children to accumulate. For this reason a token economy is particularly successful 1 Token economies establish a visual routine. Given the in inclusive classrooms. fact that most individuals with autism are visual learners, 6 Token systems are a very good opportunity to they understand the process of how the token economy introduce some real-world math skills to the child. works really well. Asking questions like, “How many stickers do you have?” 2 A token system is a great way to build an individual’s “How many more do you need to get the bubbles?” “Does ability to delay gratification as they learn to wait for Sunny have more stickers than you?” “How many more?” reinforcing items or activities for gradually lengthening can get children thinking about numbers in a new setting. periods of time. They help the individual understand that 7 Finally, use of token economies can also help to he can get to do something really enjoyable and fun, and develop an individual’s planning skills as different exactly how much work he has to do before he gets to do quantities of tokens need to be earned for different types so. Token systems can help individuals who have little of backup reinforcers, and further the tokens must be sense of time become more aware of how long they have gradually accumulated until enough have been earned. been at a task and how much longer they will have to remain at that task. Disadvantages of a Token Economy 3 By delaying the reinforcement and providing a variety As with any system, token economies too have some of backup reinforcers, token economies can ensure that disadvantages: the individual’s desire for the reinforcer remains high and 1 Teachers have to be vigilant in pairing social praise results in lowering the rate at which the individual with tokens. As with any tangible reinforcement, it is becomes satiated with a particular form of reinforcement. important to wean the individual off the tokens and Thereby the item or activity continues to have value as therefore it is absolutely necessary to pair social praise reinforcement. with the tokens so that the social praise in itself can work 4 Whilst working with a student if one has to deliver the as the reinforcement at a later stage. reinforcement after every response, then even relatively 2 When a token economy is used for a large number of brief reinforcement can greatly interrupt the interaction students or an entire class, it requires some extra effort in and slow down the rate of instruction. Reinforcing a organising and conducting the program, response with a token is quick, and allows for speedy, 3 When used inappropriately and without understanding interruption-free instruction, thereby ensuring that the the principles behind it, token economies can end up student’s attention is maintained. being counterproductive.
When the reinforcement is delivered after several IN conclusion, it is important to note that token economy responses instead of after each response, items or is not ‘special education’. Tokens in the form of stickers activities that are longer-lasting can be chosen for and stars have always been used in regular classrooms. reinforcement. As an example, where a video is a backup In fact, they work in the ‘real’ world with adults as well. reinforcer, it is probably not effective to use it as the Most adults participate in some form of token economy, reinforcer when it has to be delivered for each correct whether it be a card point system of a department store response. Even a few seconds of a video after each like ‘Shoppers Stop’ or the frequent flyer miles by ‘Jet response can slow down the rate of interaction and Airways’. possibly result in the loss of attention. However, if the video is especially rewarding for a child, he may be IF used appropriately, with a clear understanding of the willing to work for and earn several tokens in order to get principles guiding it, token economy can be a very a chance to watch it. effective system of helping children learn. Token economy systems build confidence, patience, and 5 In most school settings, it is not common to see demonstrate the meaning of the phrase, ‘Good things teachers walking around handing out crazy balls or come to those who wait.’
11 AUTISM NETWORK: VOL 7 ISSUE 2 ~ AUGUST 2012 vkWfVTe ds fy, oSdfYid fpfdRlk ¼Loyhurk½ eSF;w ds cyeksUVs ekuo fodkl foHkkx] dkusZy fo’ofo|ky;
(...cont from April 2012 issue of Autism Network)
Hkkx&3 gh le>nkjh gS] ysfdu lu~ 2003 esa ,sufMªl gsfoM vkSj fpfdRlk&de lcwr ds lkFk vkSj dqN fcYdqy fcuk muds lg;ksfx;ksa us ik;k fd ikjs dks Vhds esa ls fudky nsus lcwr dsA ds ckn Hkh vkfVTe ds gksus ;k uk gksus ij dksbZ vlj ugha iM+kA Vhdksa vkSj vkfVTe ds chp bl >wBs nkos dh otg ls Vhds ls vkfVTe ugha gks ldrk vk;jySaM vkSj fczVsu vkSj dkQh gn rd vesfjdk esa yksxksa us vkfVTe ds ckjs esa dqN vudgh ckrsa vesfjdk vkSj fczVsu ls Vhds yxokuk can dj fn;kA bldk lh/kk urhtk og gqvk vkbZ gSaA fcuk fdlh ’kd ds] blesa ls lcls [krjukd fd dbZ gtkjksa cPpksa dks [kljk gks x;k vkSj dqN dh e`R;q ysfdu iw.kZ :i ls >wBk nkok gS fd Vhdksa ls vkfVTe gks gks xbZ tcfd mudh tku cpkbZ tk ldrh FkhA blfy, ldrk gSA ;g nkok nks ’keZuke ckrksa ij vk/kkfjr gSA blesa cPpksa dks Vhdk yxok;saA ls igyk nkok ,suMªh;w QsdQhYM vkSj muds lg;ksfx;ksa }kjk lu~ 1998 dh ,d fjiksVZ esa dgk x;k ftlds vuqlkj mUgksaus fpys’ku enn ugha dj ldrk] cPpksa dks uqdlku ;k ekj thfor [kljk ds dhVk.kq mu vkfVfLVd cPpksa ds vek’k; esa ldrk gS ik;s ftUgsa xSLVªksbaVsLVkbuy leL;k FkhA ;g fjiksVZ vesfjdk esa ikjs ls gksus okys fo“kkdrk fopkj dk leFkZu izfrHkkfx;ksa ds fu;af=r p;u vkSj fu;af=r iz;ksx’kkyk djus okyksa us ,d izfdz;k ftls fpys'ku dgrs gSa] dks vkxs ijh{k.k ds vHkko esa mlh fdrkc ls okfil ys yh xbZ ftlesa c<+kuk 'kq: fd;kA fpys'ku ls ikjk fo"kkDrrk ds xaHkhj ;g izdkf’kkr gqbZ FkhA ysfdu bl lcls Vhdksa dk fojks/k ekeyksa dk mipkj fd;k tkrk gSA mudh lksp gS fd ikjk djus okys yksx tks nkok djrs gSa fd Mh-ih-Vh- Vhds ls ftlls vkfVTe gksrk gS] vxj 'kjhj ls ikjs dks fudky fn;k vkfVTe gks tkrk gS] pqi ugha gqsA gykafd ;g lp gS fd tk;s rks vkfVTe de gks ldrk gSA vxj ;g nkok lgh Hkh izfrj{kk vlkekU;rkvksa vkSj vkfVTe ds chp xgjk fj’rk gS] Fkk rks cpiu ;k fd'kksjkoLFkk ds nkSjku ;s lc djus dks fQj Hkh ;g fcYdqy lp ugha fd vkfVTe dk dkj.k Vhds dksbZ T;knk Qk;nk ugha gksxk] tcfd uqdlku rks dkQh gksrs gSaA ;g ge blfy, tkurs gSa D;ksafd cgqr cM+h [kkstksa us lky igys cpiu esa gh gks pqdk gksxkA blds vykok] Vhds okys cPpksa dh rqyuk djh vkSj vkfVTe ds gksus ;k u fpys'ku ,d iwjh rjg ls lqjf{kr izfdz;k ugha gS] vxj xyr gksus esa dksbZ QdZ ugha ik;kA nwljh ’keZukd ckr tks Vhds rjhds ls ykxw gks tk;s rks ;g 'kjhj ls ykHkdkjh /kkrqvksa dks vkSj vkfVTe dks ysdj dgh xbZ oks ,d vuqeku gS fd gVkdj uqdlku dj ldrk gSA lu~ 2005 esa ,d ikap o"khZ; Fkkeksejly tks dqN Vhdksa esa ik;k tkrk gS vkSj ikjk ;qDr vkfVfLVd cPps vcwcjoj ukMkek dh e`R;q fpys'ku gksrk gS] dqN yksxksaa esa vkfVTe dk dkj.k gks ldrk gS ^fpfdRlk* dh otg ls gks xbZA fpys'ku dks dksf'k'k er D;ksafd og yksx ikjs tSls fo“kkDr /kkrqvksa dks tYnh ’kjhj ls djukA ugha fudky ikrsA gykafd dqN fjiksVZ crkrh gSa fd Fkk;ksejly efLr“d ij fo“kkDr rjhds ls vlj dj ldrk yqijkSu fpfdRlk enn ugha dj ldrh vkSj cPpksa ds ;kSu gS vkSj bldks cpiu esa yxus okys Vhdksa ls fudky ysus esa fodkl dks uqdlku u igqapk ldrh gSSS
12 AUTISM NETWORK: VOL 7 ISSUE 2 ~ AUGUST 2012 le;≤ ge ns[krs gSa fd [kjkc ;ksX; yksx oSKkfud ,dhdj.k fpfdRlk }kjk lacksf/kr ugha fd;k x;kA lu~ 2007 ifj.kkeksa dks xyr rjhds ls is'k djrs gSa vkSj mi;ksx djrs esa dSfyQksZfu;k fo'ofo|ky; ds CyhFk us bl ckr dks /;ku gSa ¼vkSj vkfVTe ds fl)kUrksa½ vkSj QthZ mipkj dk leFkZu esa j[krs gq, dh ekrk firk VksesfVl fpfdRlk ij cgqr djrs gSaA Vhdkdj.k fojks/kh vkanksyu us lkfcr fd;s gq, T;knk iSls [kpZ dj jgs Fks] nksgjs va/ks v/;;u ls vkfVfLVd izfrj{kk foKkuh tqM+koksa dk mi;ksx bl >wBs nkos ds leFkZu cPpksa ds Hkk"kk dkS'ky ij VksesfVl fpfdRlk ds izHkko dks ds fy, djk fd Vhdksa ls vkfVTe gksrk gSA fpys'ku dk tkuus dh dksf'k'k djhA mUgksaus ik;k dh fu;af=r lewg us iz;ksx djus okys yksxksa us bl >wBs nkos dks fd vkfVYe ds vlyh esa vius dkS'ky dks mipkj lewg dh rqyuk esa T;knk y{k.k ikjs dh otg ls gksrs gSa] dks lkfcr djus ds fy, bl lq/kkjk FkkA gykafd bu mipkj nkoksa ls dksbZ xaHkhj uqdlku rF; dk lgkjk fy;k fd ikjk raf=dk ij vlj djus okyk ugha gks ldrk] ysfdu mu ij isls [kpZ gksrs gSa vkSj og fc’k gksrk gSA vesfjdu fpfdRld ekdZfx;j }kjk izLrkfor enn Hkh ugha djrsA fpfdRlk 'kk;n lcls T;knk csrqdh vkSj [krjukd gSA fx;j us 'kq:vkr djh vaxzsth euksoSKkfud lkbeu csjksu dksgsus ds yl eqDr vkSj@;k dSlhu ¼nw/k dk izksVhu½ eqDr vkgkj enn nkos ds lkFk dh lsDl gkseksZUl VsLVksfLVjksu dk tUe ls iwoZ djus ds fy, lwfpr fd;k x;k gS] ysfdu lkfcr ugha fd;k dk mPp Lrj vkfVTe dk [krjk c<+k ldrk gSA gykafd x;k tUe ds iwoZ VsLVksfLVjksu gkseksZUl dh ckr lp gS ysfdu dbZ o"kksZa ls yl eqDr vkgkj ¼xsgwa mRikn½ vkSj@;k dSlhu fx;j us bldk leFkZu vkfVfLVd cPpksa dks fy;ksizksykbM ¼nw/k mRikn½ vkfVTe esa enn ds fy, tkus tkrs gSa] ysfdu ¼ywijkSu½ nsus ds fy, djk fy;ksizksykbM tks fd vdkfyd 'kk;n gks dHkh mudh oSKkfud tkap dh xbZ gksxhA mnkgj.k ;kSou vkSj izksLVsV dSalj ds fy, ,d fpfdRlk gS] jklk;fud ds fy, vkfVfLVd yksxksa dh nnZ ds izfr vlaosnu'khyrk ds cf/k;k ds :i esa dke djrk gSA ;g vkØked O;ogkj dks fy, ;k /kkj.k gS fd yl vkSj dSlhu ds vkf'kd ikpu ls oSls gh de djrk gS tSls cf/k;k djrk gSA yijkSu dk eqDr gq, izksVhu ds VqdM+s 'kk;n fjlkonku vkarksa dh nhokj mi;ksx u djsaA es ls ikfjr gksdj [kwu ds lapyu esa fey tkrs gSa vkSj
T;knkrj ^laosnh ,dhdj.k fpfdRlk okLro esa laosnh u'khys inkFkksZa ds izHkkoksa dh otg ls 'kq: gq, nnZ dk Hkze ,dhdj.k ds fy, ugha gksrh nsrs gSaA ,d lacaf/kr ifjdYiuk gS fd vkaf'kd :i ls ipk VksesfVl fpfdRlk vkSj mlls lacf/kr Jo.k ,dhdj.k gqvk izksVhu izfrj{kk izfrfØ;k 'kq: dj ldrk gSA cgqr de fpfdRlk ds ckjs esa cgqr dqN dgk x;k gS fd ;g dku ds ;k dksbZ Hkh lh/ks izek.k bu ifjdYiukvksa dks lkfcr ugha izf'k{k.k dk rjhdk gS ftlls vkfVfLVd yksxksa ds djrs] ysfdu fQj Hkh ekrk&firk yl eqDr vkSj dSlhu eqDr bysDVªkfud lalkf/kr vkokt vkSj@;k laxhr ds }kjk dqN vk/kkj ds dfFkr izHkko dh ldkjkRed fjiksVZ ns jgs gsAA /ofu;ksa ds vuqdwy cuk;k x;kA buesa ls fdlh Hkh rjhds dks 'kk;n D;ksafd vkfVfLVd cPpksa ds Hkkstu ds lsou dks fu;af=r v/;;u ls lkfcr ugha fd;k tk ldrk gSA fQj Hkh fu;af=r djus dh dfBukbZ ekrk&firk ds fy, ,d tkuk fpfdRld vDlj VksesfVl ;k Jo.k ,dhdj.k fpfdRlk ds ekuk fo"k; gSA bl vkèkkj ds fy, flQZ ,d nksgjk va/k fy, cM+s 'kqYd ys ysrs gSaA gykafd ;g lp gS fd cgqr lkjs v/;;u ykxw djk x;k gSA o"kZ 2006 esa] tSfuQj ,syMj vkfVfLVd yksxksa dks vyx&vyx laosnh rjhdksa dks vkSj muds lg;ksfx;ksa us ¶yksfjMk fo'ofo|ky; esa ys[k ,dhdj.k djus esa ijs'kkuh gksrh gS&tSls fd ,d gh le; esa izdkf'kr fd;k ftlds vuqlkj mUgksaus cPpksa ds O;ogkj dk ns[kus vkSj lquus esa ijs'kkuh gksuk ;k nks vyx&vyx LFkkuksa va/k ek=kRed ewY;kadu fd;k vkSj vkgkj dk O;ogkj ij ij phtksa dh rjQ /;ku nsus esa ijs'kkuh gksukA buesa ls dksbZ dksbZ izHkko ugha ik;kA fQj Hkh dqN ekrk firk us nkok fd;k Hkh laosnh ,dhdj.k leL;kvksa dks VksesfVl ;k Jo.k fd tc muds cPps ml vkgkj ij Fks rc mUgksaus vius cPps
13 AUTISM NETWORK: VOL 7 ISSUE 2 ~ AUGUST 2012 esa igpkuus ;ksX; lq/kkj ns[ksA vxj okLro esa yl eqDr vkfVfLVd yksx Hkk"kk vkSj ckrphr tSls rst ek/;e dh vkgkj dk ldkjkRed izHkko iM+rk gS rks bl rjg dk izHkko rqyuk esa èkheh xfr ls Vkbfiax djds vf/kd lapkj djus esa dsoy Hkkstu ds lhfer lsou dk ifj.kke gks ldrk gS&eq[; l{ke gks ldrs gSaA ¼esjs fo|kFkhZ xzsl psu vkSj dhFk FkksMj us :i ls vkfVfLVd cPpksa ds milewg esa ftUgsa bl fo"k; dh rS;kjh ls lacaf/kr ,d ys[k fy[kk gS½ cgqr xSLVªksbaVsLVkbuy leL;k,a gSaA yl ;qDr [kkuk tSls jksVh lkjs vfHkkHkkodksa us ekuk gS fd muds cPps tks ,Q-lh- dk vkSj ikLrk dkcksZgkbMsªV ds eq[; lzksr gSa vkSj blfy, yl vk;ksx djrs gSa] de grk'k gksrs gSa tc og VkbZi dj ikrs u"V de djus ls iwjh dSyksjh dk lsou de gks ldrk gS gSaA gykafd bl rjg ls okLrfod lapkj ugha gks ikrk gks vkSj rc 'kk;n mlls tqM+s xSLVªksbaVsLVkbuy ladV dks de fQj Hkh dqN ekeyksa esa HkkoukRed ykHk tSls fd cPps ds djus dh mEehn djh tk ldrh gSA lEeku vkSj mlls tqM+s jgus ds fy, dksf'k'k djh tk ldrh gSA ;g cPpksa dh {kerkvksa dh cqf) esa fo'okl fnykus ds fdlh enn ls djk gqvk lapkj ,d =`fViw.kZ fof/k gS fy, Hkh cgqr t:jh gSA vkSj dqN ekeyksa esa ,Q-lh- ls ysfdu vxj gkykr ns[ksa rks de ls de gkfudkjd ugha gSA varr% fcuk fdlh dh enn ds okLrfod lapkj dj ldrs 1970 ds n'kd esa vkLVªsfy;kbZ f'k{kd jkst+eSjh Øklys us gSaA fQj Hkh ,Q-lh- ,d lafnX/k vkSj =`fViw.kZ rduhd gS xaHkhj efLr"d i{kk?kkr ls ihfM+r cPpksa ds gkFk] gFksyh vkSj D;ksafd ,Q-lh- fpfdRld dh enn vkSj fcuk enn ds Hkh dykbZ dk leFkZu 'kq: dj fn;k D;ksafd og cqf)ekuh ls VkbZi djs gq, lans'k Li"V :i ls lgh ugha ekuus pkfg, laokn djus vkSj cksyus esa vleFkZ gksus ds ckotwn Hkh yach vkSj ekrk firk dks cqgqr lko/kku jguk pkfg,A vxj mUgsa ckSf)d xgjh laokn dqathiVy ;k v{kj iVy ij VkbZi ,Q-lh- mipkj ds fy, T;knk /ku nsus ds fy, dgk tkrk djds dj ik jgs FksA bl rduhd dk dHkh Hkh cM+s iSekus gSA ij fu;af=r v/;;u ds :i esa ewY;kadu ugha djk x;k ysfdu fQj Hkh ckn esa bls mu vkfVfLVd yksxksa ds fy, rst rjDdh okyh fof/k vkj-ih-,[email protected] b’kkjk mi;ksx djk x;k tks cksy ugha ldrs Fks ;k tks Hkk"kk dk djrh gqbZ fof/k vkbZ-ih-,e- Bhd ls mi;ksx ugha dj ldrs FksA o"kZ 1989 esa ;g fof/k vkfVfLVd dfo fVVks eq[kksik/;k; dh ek¡ lksuk eq[kksik/;k; fljSD;wt fo'ofo|ky; ds MkSx fdysu }kjk vesfjdk esa us f'k{kk dk ,d rjhdk fodflr djk tks vkj-ih-,e- ds vk;kfrr djh xbZA ckn esa bl fof/k ds lanHkZ esa >wqBs vkjksiksa uke ls yksdfiz; gks x;kA lgt Kku ij vk/kkfjr bl fof/k dh ,d Ja`[kyk vkbZ ftlesa dgk x;k fd cgqr lkjs dks bldk uke iksfVZ;ka ;kojlu us fn;k Fkk tks Mkso 'kslVsd fpfdRld vUtkus esa vius xzkgdksa dks dqN fo'ks"k v{kj dh ek¡ vkSj D;ksj vkfVTe ckvks dh lg&laLFkkid gSaA lqJh fl[kk jgs gSaA bl izdkj ;g rduhd ,d nks"kiw.kZ rduh gS ;kojlu us ckn esa bl rduhd ds vkSj rRo ^vkbZ-ih-,e-* tks lkekU; :i esa fo'oluh; lapkj mRiknu ugha dj uke ds uhps fodflr djsA bl rduhd dks 'kq:vkr ldrhA bl rduhd ds yxHkx gj fu;af=r v/;;u esa miHkksDrkvksa dks cgqr vklku iz'u ds nks oSdfYid ik;k x;k fd xzkgd mu iz'uksa ds mRrj nsus esa vleFkZ Fks izfrfdz;kvksa esa ls ,d dks p;u djus dk izf'k{k.k nsdj djh ftuds tokc ,Q-lh- fpfdRld dks gh ugha irk FksA fQj xbZ tSls dh vkleku yky ;k uhys jax dk gS \ ;k ^^,d Hkh cgqr lkjs yksx ftUgsa vkfVTe gS mUgkssaus ,Q-lh- dh tek ,d D;k gksrk gS \ tc ,d ckj miHkksDrk nks fodYiksa 'kq:vkr fpfdRld dk gkFk idM+ dj djh vkSj varr% fcuk esa ls ,d pquus esa vkjkenk;d gks tkrk gS] rc tfVyrk fdlh dh enn dss lQy gks x;sA 'kk;n bu ekeyksa esa ls /khjs&/khjs c<+kbZ tkrh gS tc rd cPpk jkseu fyfi ds lcls izfl) ekeyk lqbZ :fcu dk gS ftlus ,Q-lh- dk NCchl v{kjksa esa ls fodYi pqu ikrk gSA egRoiw.kZ ckr gS mi;ksx djds Lora= :i ls Vkbfiax djds fo'ofo|ky; dh fd miHkksDrk dks fpfdRld ls dksbZ HkkSfrd lg;ksx ;k fMxzh gkfly djhA tSo raf=dk foKku us ekuk gS fd ekxZn'kZu ugha feyrk ¼bl izdkj ;g rduhd ,Q-lh- ls
14 AUTISM NETWORK: VOL 7 ISSUE 2 ~ AUGUST 2012 vyx gS½A dsoy FkksM+s ls xSj fof'k"V ladsr fn;s tkrs gSa tSlk O;ogkj djk Fkk\ vxj ugha rks tokc nsus okyksa esa D;k tks vfLFkj /;ku ds nqckjk Bhd djrs gSaA mnkgj.k ds fy, fof'k:V y{k.k Fks tks tokc nsus okyksa esa ugha Fks \ miHkksDrk ds vka[ksa dks lkeus v{kj cksMZ dks fgykuk] vkns'k nsuk ;k n`<+rk ls cPps dk mdlkukA vkj-ih-,e-@vkbZ-ih- vki tks Hkh lqurs gSa] lc ij fo'okl uk djsaA vkfVTe ds ,e- dk fu;af=r v/;;u ugha djk x;k vkSj tc rd fy, gj nkos okyh fpfdRlk ds fy, dgkuh gksrh gS fd fu;af=r v/;;u ugha gks tkrk] rc rd vkj-ih-,e-@vkbZ- blesa esjs cPps ds fy, dke fd;k gSA euq"; ds :i esa ge ih-,e- vk/kkfjr lapkj lapkj dh lPpkbZ lansg esa jgsxhA bl vDlj oSKkfud fu;af=r iz;ksxksa esa bLrseky gksus okys dkj.k ls ekrk firk dks lko/kku jguk gksxkA vxj mUgsa fujkdkj vkSj vyx Hkkoksa ds ckjs esa ugha lksp ikrsA bldh vkj-ih-,e- fpfdRlk ds fy, cgqr T;knk iSls pqdkus ds fy, txg ge Bksl vkSj O;fDrxr dgkfu;ksa ls T;knk iszfjr gksrs dgk tkrk gSA tSlk fd ,Q-lh- ds ekeys esa gS] vkj-ih-,e- gSaA tc ge ns[krs gSa fd fpfdRlk ls O;fDr lq/kj jgk gS rc @vkbZ-ih-,e- ls dqN miHkksDrk Lora= :i ls ckrphr ge nks vkSj nks ,d djus yxrs gSa vkSj xyrh ls dkj.k vkSj djuk lh[k x;s gSaA bu lc esa lcls mYys[kuh; gSa fVVks izHkko ds chp dk fj'rk
15 AUTISM NETWORK: VOL 7 ISSUE 2 ~ AUGUST 2012 H E L P L I N E
Q I’m from Alexandria, Egypt. My son is 23 months services available for children with autism. Very often old, and his paediatrician suspected that he has some children are at least 3 years old before a diagnosis of autistic symptoms. I have read up quite a lot about autism is suspected even though we know that autism can autism online, however I cannot judge if my son is really be identified as early as 18 months of age. It is truly autistic or not. terrific that you are seeking answers when your child is only 23 months of age. I’d like to describe a few of the main symptoms that my son has. He tends to flap his hands frequently. He does In India as in many parts of the world, at this age, we are not point to things, nor does he use gestures like ‘bye able to screen a child for autism and say if s/he is ‘at risk’ bye’ etc. On some instances , I have observed him for autism. Other words that are used to describe this are walking on his toes: a few steps every 2-3 weeks. He has ‘symptoms of autism’; ‘mild autism’ or PDD. Regardless very good eye contact even with strangers, but when I of the term used, we strongly recommend that children sing to him, he looks only at my mouth. who is ‘at risk’ of a later diagnosis of autism are put on an early intervention programme as soon as possible using There is a delay in speech and at present he only babbles autism specific techniques. A follow-up visit for a with sounds. He started babbling at 9 months and then diagnostic assessment in 9 -12 months is then stopped at about 18 months. Then, about two months recommended. This ensures that we have effectively ago, when we completely stopped watching TV, which utilised the child’s early years that has been proven to be he used to spend extended hours in front of, he started so very important to development. babbling again.He doesn’t go to a nursery, so I cannot describe what his interactions with peers might be like. Some of the behaviours that you describe in your email However, with his cousins he tends to play for some time closely resemble autism. However, a diagnosis can be and then stops and so on. given only after meeting with the child. However, in the meantime you could also answer a few questions at home I have gone to a few centres dealing with autism in my through the attached questionnaire the M-CHAT. This is city. One of these centres diagnosed my son as having a screening tool that is well known and used ‘severe autism’. Another organisation I visited said that internationally and can be a reliable indicator to check if my son has only some symptoms of autism. your son is at risk for autism. You can also read about the M-CHAT on the internet. I have also consulted a professor in pathology, and he said that all the symptoms my son has are only due to the Here are some organisations that we are aware of in delay in speech. He said that this was due to the extended Egypt. Please note that this is just a simple list of places periods that he would spend in front of the TV and that we know of and not a recommendation. There are we were not talking enough to him and not interacting probably many more organisations that are not on this list. enough with him. The professor also administered a test on my son, and told us his abilities are of 16 months old Organisations in Egypt toddler. The Egyptian Autistic Society, 7 Naguib Mahfouz St. I am really confused. Sometimes my son seems perfectly New Nirco, Maadi, Cairo well, and other times he seems typically autistic. Can you give me any opinion in view of above information? Also The ADVANCE Society (The Egyptian Society for if you know of a center/doctor in my city, can you please Developing Skills of Children with Special Needs) give me contact details of the same? 34 Al-Nadi Al-Gadeed St., New Maadi, Cairo 11435 Tel: 2025193721/ 5193723 A I can well imagine the amount of confusion that must Fax: 2025203110 be surrounding you at the moment. In India, we are faced Email: [email protected] with a very similar situation - limited awareness and Website: http://www.advance-society.org
16 AUTISM NETWORK: VOL 7 ISSUE 2 ~ AUGUST 2012
The ADVANCE Center [run by Learning Resource social pressure to have their speech match the speech Center], 34 Al-Nadi Al-Gadeed St., New Maadi, Opp. of others. Is your son aware of his speech difficulties? the New Maadi Telephones Central Office, Cairo 11434 The four sounds that you mention are made in the same Tel: 202519-3721, 202519-3723 place in the mouth and using the same process. This Website: http://www.lrcegypt.com/autism.html means that your son’s speech difficulties are unlikely to be due to a serious medical issue. It is more likely that Q Our 15-year old son has autism. I have noticed a when you son was younger he did not tune into these difficulty in his speech right from the time he started sounds and has now developed a habit of producing uttering sounds. He has a difficulty in uttering the sounds these sounds in an atypical way. He has articulation of ‘k’,’ kh’,’ g’ and ‘gh’. Now when he recites lines of difficulties. poetry from memory, we see that he has a hesitation in doing so, and feel that perhaps this is because of the How does your son produce these sounds? Often presence of the ‘k’,’ kh’,’ g’ and ‘gh’ sounds there. He individuals make these sounds at the front of the mouth recites haltingly, but he does not say he has any pain or rather than the back of the mouth so the sounds are such other thing. His speaking otherwise is normal as far replaced with ‘t’ and ‘d’. as his condition allows. His eating habits and patterns are absolutely normal. Is the problem mentioned likely to be Since, presumably, you do not have access to a speech very serious concerning his vocal chords — something to and language therapist locally, perhaps you could check worry about and worth examining by a specialist? Ours is out this website. http://speech-language-therapy.com/ a small place without such specialists. Please advise what index.php?option=com_content&view=article&id=11&Itemid=117. we may do now. In particular you may find the Resources and Word List section helpful. I am unsure about your son’s language A Speech difficulties are common in verbal individuals level so not all activities may be appropriate. with autism, this may be partly due to reduced ability to ‘tune in’, listen and process sounds in the environment. In (The responder is Maeve Mc Cutcheon, Speech and addition to this, people with autism sometimes feel less Language Therapist at Action for Autism)
Upcoming Workshop at a Glance
AFA’s much-awaited Annual Training Workshop: autism and approach teaching from that paradigm of Know Me Teach Me has been scheduled from 4 - 7 understanding. This leads to participants being able to October 2012. Through a series of lectures, videos, apply and generalise their learning to teach children practical demonstrations and interactive exercises, the holistically and deal with challenges faced in varied workshop will focus on an understanding of autism and situations and environments. specific teaching strategies that take into account the unique learning styles of people with autism. The workshop is for both the newbie as well as a refresher for experienced hands and can be attended by Based on techniques, internationally recognised as ‘Best all those who work closely with children with autism on Practises’ for teaching people with autism, modified to a daily basis: professionals of every discipline related to take into account our own cultural needs, the participants ASD, as well as parents interested in learning how to will learn creative and resourceful methods to teach teach their children life skills. communication, social skills, activities of daily living, cognitive skills, as well as address challenging Registration forms for the workshop are available on our behaviours - a priority both in classroom situations and at website www.autism-india.org. home. For more information, please email us at: The workshop is designed to move away from providing ‘solutions’ or ‘recipes’ in one particular area of difficulty,
17 AUTISM NETWORK: VOL 7 ISSUE 2 ~ AUGUST 2012 (RNI No. DELBIL/ 2006/ 2317223172)
MEMBERSHIP TO AFA B O O K P O S T To continue to receive ‘Autism Network’ please complete the revised application below, cut or photocopy, and return it to us as soon as possible. MEMBERSHIP DETAILS Parents: Associate Member – Annual: Rs 150/- Full Member – Annual: Rs 500/- Overseas Member : $ 30 Professionals: Associate Member – Annual: Rs 150/- Full Member – Annual: Rs 1000/- Institutional Member – Annual: Rs 2000/- Overseas Member: $ 50 Associate Members receive copies of Autism Network and information on all upcoming events and activities. Full Members, Life Members, Overseas Members and Institutional Members are in addition, entitled to concessionary rates for AFA events and workshops.
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Other If you are a parent of a person with autism, please answer: Child’s name Sex Date of birth dd mm yr If undelivered please return to: Diagnosis (if known) The Editor, Autism Network, • I wish to become a member of AFA and enclose: Pocket 7&8, Jasola Vihar, New Delhi - 110025 Rs 150/- Rs 500/- Rs 1000/- Rs 2000/- Published & printed by Merry Barua (Send Demand Drafts Only) Draft No: on behalf of Action for Autism (AFA) from Pocket 7&8, Jasola Vihar, New Delhi - 110025 Dated On Bank Amount in words Tel: 91 11 40540991, 91 11 65347422 Email: [email protected] • I wish to give a contribution to AFA Website: http://www.autism-india.org Amount in words Printed at: Niyogi Offset Private Limited Mail demand draft payable to: D-78 Okhla Industrial Area Phase I, Action for Autism, New Delhi - 110020 Pocket 7&8, Jasola Vihar, New Delhi - 110025 Tel: 26816301/26813350/51/52 Fax: 26813830 Contributions are tax exempt under Section 80 G of Income Tax Act. Editor: Merry Barua
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