Helpline Q & A
In each issue of our Autism Network Journal we answer as many questions about autism, dealing with behaviours, and other issues raised by families in India. Below is a partial compilation of these questions and answers.
We have sorted these by general topic, but you will find comments on multiple behaviours and concerns within a given question and answer as well.
Browsing through these questions is also a good way to better understand the concerns and situation of parents of autistic children in India.
Addressing Unwanted Behaviour
Q: Hi. I have a son who is 6 years old. He has suddenly become a rebel and doesn't want to listen to anything I say. He tends to do the opposite to what I say, and he will look at me and do it. His water craze is driving me crazy. No matter how much water play time I give him, he will still go and spray water from the tap. We have locked all the taps, but by mistake if I leave a tap open even for two minutes, the place becomes a pool. He also runs on the road. I'm having a really tough time. Please help ...Read More Show Less
Ans: Thank you for writing in. We appreciate how you must be feeling right now, but, do rest assured that the issues can be overcome and the situation will become less stressful. One of the things that you mentioned is that your son has suddenly become a ‘rebel’; that he does not want to listen to anything you say and instead tends to opposite of what you tell him to do. Does this mean that he does not follow any of the instructions that you give? Does it mean that he follows instructions related to things he likes to do but not others? If so, then this is a situation that is often seen in a lot of children with autism.
We know that communication can be very confusing for people with autism. They have difficulties in shifting attention (from something that they are already attending to, to something else that we may want them to attend), difficulties and delays in processing information, in turn taking, in waiting, all of which are some basic skills for successful communication. Given these difficulties, a lot of children with autism may prefer not to interact with people and would rather do their ‘own thing’. This in turn may also impact the quality of communication that we have with children with autism. They may not respond to us when we speak to them and because two way communications is often limited with our children, we tend to restrict our communication with them to primarily giving instructions. We tend to talk to our children and give them attention only when we want them to do something we want them to. And when that happens, we may be turning the communication process, which is already difficult for our children, somewhat aversive. Because the child is learning that every time he hears a voice, it results in a demand being placed on him; he would have to stop doing something he likes being engaged in and instead do something he does not want to do. And in some situations, this could reach a stage, where the averseness is so extreme, that he may not want to listen to anything that we say, even when it is related to a thing that he likes.
When faced with a situation where the child seems to be having a lot of difficulties in following our instructions, it may be best to step back a bit and reduce the demands we put on the child, to initially drastically reduce the number of instructions that we give to our child. So, for the time being, you could try to limit your instructions to just those which are essential for his daily functioning and/ or related to activities that he finds very enjoyable. When giving these instructions it is important to ensure that you have your son’s attention before giving the instruction, since it could help him to focus on what is being told to him better. It may also be helpful to break instructions down. For example, if you want your son to put a toy in the drawer, instead of just saying “Put your toys by”, it may help to break the instructions down. You could first say “Open drawer”, and once he has done this. “Pick toy up” and then “Put toy in drawer”. Once you have given an instruction, in case he does not comply immediately, try not to repeat the instruction and instead physically guide him through the motions. And after he has complied (even if have had to guide him), it is vital to remember to praise and reinforce his efforts.
In addition to this, you may also want to use a visual to augment your verbal instruction. So, should you ask him to sit, you could also show him a picture of ‘sitting’. Being visual learners (those who process visual information better than verbal information)a lot of children with autism find it easier to follow a visual instruction instead of verbal one. And, of course, it is essential to reinforce and praise whenever he does follow and instruction.
At all other times, it may be helpful to work on making communicating and interacting with us fun for the child….something that he looks forward to. This could include interacting with him with exaggerated energy and enthusiasm and following the child in whatever he likes to do, letting him take the lead. You have mentioned that your child likes water paly. So water play may be a great activity to join him in. If he likes splashing water, you could also try to do the same with him. But, it would be important to ensure that you are placing no demands on him at this time, but instead just following his lead. Talking about the water play, making it sound even more exciting, singing to him at this time can all help in your son enjoy spending time with you and listening to you talk. You could do this with any activity that he really enjoys. You could also offer him things that he likes, for ‘free’, without placing any demands on him, again reinforcing his just being around you and listening to you.
This will also help with another aspect. You mention that your son often looks at you when he does not follow an instruction. It may be worthwhile to figure out how you react in this scenario. If you react with a lot of animation, maybe by raising your voice or running towards him to stop him, it is possible that he is seeking this reaction, this animation. And hence, he may continue to do the opposite of what you ask him, so that he can continue to get this animated reaction. Try and interact with him with exaggerated energy and enthusiasm in the manner that I have mentioned in earlier paragraph in situations that are not oppositional. If you do so, this behavior of his will most certainly come down. At the same time, in the event that he does oppose you instructions at any time, it is important that you keep your reactions neutral, so that he no longer gets the animated reaction he is seeking and his motivation to oppose you in order to get the reaction reduces.
With regards his water play, it is great that you have already set aside ample time for him to play with water. But, there are a few things that you may want to keep in mind here, The first being, is water play that you are allowing him to do similar to what he seeks? For instance, if he likes playing with water from a running tap, playing in a tub with water may not seem as exciting to him. In which case, is it possible to set aside time to let him play with water from a running tap? Also does he have any predictability as to his times to play with water? Giving him frequent short periods of time to play with water while making the activity predictable may also help. You could sue a visual schedule to help him know the specific water play times. A visual timer for the next water play time may also work. Else you can represent the time visually on a clock face. For instance, if his next water play is at 6 o’clock, you can put a ‘bindi’ at 6 on the clock and tell your son, that when the small hand reaches 6, it will be time for his water play. It may take him a few days to figure this out, but, through doing this consistently, he will learn. In addition to all of this, when trying to reduce a behavior, it is vital that we do not allow for an opportunity to let the behavior happen, It would be ideal of you remained completely focused and locked up the taps at all times, till the behavior reduces. If you do forget, and your son does flood the kitchen, do try to keep your reactions neutral in the manner that I have mentioned earlier. Once the behavior has reduced, you could gradually start unlocking the taps for brief periods of time and remain focused, ensuring that your son does not open the tap. And then you can reinforce him big, for keeping hands to self even though the tap is not locked. This will once again be a gradual process and patience may be the key.
You have mentioned that your son runs on the road. Do you mean that he runs out of the house and then goes to the road? If that is the case, as with the water taps, it is best to remain focused and ensure that your doors are locked (with a lock and key. if required) at all times. If he is running away when walking on the road with you, it would be advisable to hold on to him and not let him run away. What often happens in that when the child runs away, we tend to chase after them, almost turning it into a ‘run and chase’ game, one that the child really enjoys. And, since it may be unsafe to just let the child run on the road and not try to catch him, it would be best to avoid the situation altogether, by ensuring that we do not let him run in the first place. Additionally, it is equally important to praise the child when he is walking well, and keep the walk fun by interacting with him, talking or singing.
In conjunction with all of this, we would also suggest that you work intensively in your son’s communication. If he is a verbal child, encourage his vocals. If he is not, you could try to introduce some AACs (Augmentative and Alternative Communication) like signs or the PECS (Picture Exchange Communication System) to him. A lot of challenging situations arise because of our children being unable to express themselves appropriately and with communications skills getting enhanced; a lot of these situations will diminish naturally.
We do hope that you find some of these strategies useful and wish you the best in your journey with your son.
Year published in: 2015
Q: We are a family of five, consisting of myself, my wife, our two sons and my father. Due to differences in habits, thinking, expectations from each other etc, the atmosphere in our house has been quite unpleasant. My older son is hearing impaired. He studies in an ICSE school, but is finding it difficult to cope with his academics due to low interest & concentration. My wife had also been an average student, but had been brought up with very strict discipline. It is probably because of this that she gets very irritated and angry, in case of any mistakes being repeated by our son, leading to physical and verbal abuse. I have been brought up with slightly different belief systems, wherein, the only thing considered important was to keep on doing one’s work to the best of one’s ability and leave the rest to God. In my wife’s case, she expects the child to do all the daily activities completely on his own and that too at the precise designated time. However, it is children that we are talking about, who may at times be in their own world and make mistakes because of forgetfulness or just playfulness, and not be able to maintain the strict time schedule that their mother expects from them. But, when things don’t get done right, at the right time, my wife gets very angry and brings her anger out on all present. We request to please suggest us a way to come out of this disharmony and how to deal with each other, especially with the children. ...Read More Show Less
Ans: Thank you for writing to us. What you describe is a very common situation, wherein, although both parents love their children very much and are working towards a better life for them, they have very different approaches to reaching the same goal. You have not mentioned in which city you are based in. Perhaps we could suggest some professional who could facilitate this process. Many of us get angry because of limited understanding of child development, especially when as a child we ourselves have not received the patience or space to make and learn from our mistakes. Since we have not seen and experienced it, we do not instinctively know and understand it and thereby may be unable to implement it. It might be useful to think about the things that you have been doing to address your older child’s hearing impairment. Does your wife understand those things? Are the disciplinary rules similar for the younger one? How is your younger child coping? Is your wife’s behavior similar towards both kids or are there issues with acceptance of older child’s special needs? You might find it useful to meet with a psychologist to discuss this further. If your wife does not agree, perhaps you could go alone and talk about things you can do to facilitate an improvement in the environment for your children and your family. You could also approach this with your wife to seek counseling on how to make children ‘better behaved’, as this approach might appeal to your wife and get her cooperation. A psychologist will be able to address it through modification in parenting techniques. Meanwhile, as you probably have already been doing, continue to tell your children how much you love them and how proud you are of them. Do continue to acknowledge their efforts and achievements in everything that they do. We wish you the very best.
Year published in: 2012
Q: A parent whose child is an ex-student of a very reputed special school in Mumbai has brought to our notice that the school has a seclusion room. The room is about one metre by one metre in area and is painted black from within. It has no light and little ventilation. The door has half a dozen padlocks on it from the outside. When a child is particularly unruly, upset or having a tantrum, he/ she is locked up in solitary confinement here until he/she has calmed down and begs to be let out. As students of psychology, we are concerned with this practice. The parent was told that this practice works particularly well for children with ASD, but only those that can express themselves in speech. Is this true? ...Read More Show Less
Ans: Thank you for bringing up the issue of the use of aversives for dealing with difficult behaviours in people with autism. It is an issue that is often brought up by parents as well as concerned professionals working with people with autism and one that seems to elicit questions with regards to the effectiveness of such procedures. Unfortunately both parents as well as professionals often justify the use of violence against children with autism. Behaviours that are seen as challenging are a form of communication given the difficulties that children with autism have in understanding communication and expressing themselves. Sure, we need to be ‘firm’, consistent, and clear in our communication and in helping with behaviours. However, firm does not equate with violent. Instead we make our children follow through with instructions given to them and we follow through on what we say to them. We also keep in mind that behaviours always happen for a reason though the reason may not always be apparent to us. Behaviour is the result of a person’s history and his current environment. Every behaviour serves a function: it gets the person something he wants (something to eat, drink, go out etc), gets him attention, gets him out of a situation or activity that he does not want or finds unpleasant, or gives him some sensory inputs, and so on. If we treat the behaviour symptomatically, the behaviour may go away in the current situation, but will resurface because we have not been able to address the root cause of the behaviour. It’s something like this: Say one has a fever, and you give the person a paracetemol. If the fever were the result of a stomach infection, the paracetemol will take care of the fever for a little while; but it will resurface. To get complete relief from the fever we would need to check WHY the fever is happening…is it because of a throat infection, a stomach infection, a viral infection? It is only when we treat the underlying cause of the fever that we will be able to stop the fever recurring. This applies to behavior as well. So, any strategy to deal with a challenging behaviour will need to address the root cause of the behaviour. Punishment and aversives are often believed to be synonymous. However, punishment is about bringing down a behaviour, it is not about retribution or retaliation. It is not about making the individual ‘pay’ for ‘inappropriate’ behaviour. If we are going to be using an aversive as a punishment technique, we have to see whether the behaviours for which this aversive is being used goes down. It is not sufficient for the behaviour to stop occurring in just the current situation, but it is important for the behaviour to reduce and stop occurring in the future too. It is only when this happens that we can say that the use of punishment has been successful. The very fact that in the two situations the behaviours for which the children being locked up in the dark room, and being hit across the face, have not gone away shows the futility of such methods, apart from being a violation of human rights. In the use of aversive, there is another thing that one needs to be careful of, and that is the aspect of observational learning. Every time we hit a child when he has done something we don’t want him to do, we are teaching the child that it is okay for him to hit us when we do something that they do not want us to do. Physical abuse per se, and especially of a population that in many ways does not have a voice, is unjustifiable, unreasonable, and unethical.
Year published in: 2010
Q: A particular school in Mumbai that specializes in ASD believes in slapping children right across the face and also hitting them on parts of the body. The person who has set up and runs this school routinely does so even in the presence of the child’s parents. The ‘reasoning’ offered is that “children with ASD have less behavior problems if dealt with firmly”. Most parents hesitate to question the person’s actions and reasoning as they fear that their child will not be welcome in the school anymore or worse still, that their child will be picked on and hit even more in the parents’ absence. How does one deal with such a situation? Does it help at all to deal with ASD children in this manner? ...Read More Show Less
Ans: Thank you for bringing up the issue of the use of aversives for dealing with difficult behaviours in people with autism. It is an issue that is often brought up by parents as well as concerned professionals working with people with autism and one that seems to elicit questions with regards to the effectiveness of such procedures. Unfortunately both parents as well as professionals often justify the use of violence against children with autism. Behaviours that are seen as challenging are a form of communication given the difficulties that children with autism have in understanding communication and expressing themselves. Sure, we need to be ‘firm’, consistent, and clear in our communication and in helping with behaviours. However, firm does not equate with violent. Instead we make our children follow through with instructions given to them and we follow through on what we say to them. We also keep in mind that behaviours always happen for a reason though the reason may not always be apparent to us. Behaviour is the result of a person’s history and his current environment. Every behaviour serves a function: it gets the person something he wants (something to eat, drink, go out etc), gets him attention, gets him out of a situation or activity that he does not want or finds unpleasant, or gives him some sensory inputs, and so on. If we treat the behaviour symptomatically, the behaviour may go away in the current situation, but will resurface because we have not been able to address the root cause of the behaviour. Its something like this: Say one has a fever, and you give the person a paracetemol. If the fever were the result of a stomach infection, the paracetemol will take care of the fever for a little while; but it will resurface. To get complete relief from the fever we would need to check WHY the fever is happening…is it because of a throat infection, a stomach infection, a viral infection? It is only when we treat the underlying cause of the fever that we will be able to stop the fever recurring. This applies to behavior as well. So, any strategy to deal with a challenging behaviour will need to address the root cause of the behaviour. Punishment and aversives are often believed to be synonymous. However, punishment is about bringing down a behaviour, it is not about retribution or retaliation. It is not about making the individual ‘pay’ for ‘inappropriate’ behaviour. If we are going to be using an aversive as a punishment technique, we have to see whether the behaviours for which this aversive is being used goes down. It is not sufficient for the behaviour to stop occurring in just the current situation, but it is important for the behaviour to reduce and stop occurring in the future too. It is only when this happens that we can say that the use of punishment has been successful. The very fact that in the two situations the behaviours for which the children being locked up in the dark room, and being hit across the face, have not gone away shows the futility of such methods, apart from being a violation of human rights. In the use of aversive, there is another thing that one needs to be careful of, and that is the aspect of observational learning. Every time we hit a child when he has done something we don’t want him to do, we are teaching the child that it is okay for him to hit us when we do something that they do not want us to do. Physical abuse per se, and especially of a population that in many ways does not have a voice, is unjustifiable, unreasonable, and unethical.
Year published in: 2010
Q: My younger brother has autism. He is 11 years old. He really dazzles us by his intelligence and captivating command over computer programs. He loves music and learns to play piano under guidance of a pianist we have hired. We have admitted him in a mainstream school, so that he learns to sit in school and study there with other students as he rarely shows tendency to play with the children in our colony. He sometimes plays with us and most of his leisure time is spent on playing computer games etc. When my mother teaches him at home, he works well, but he is not as good when he is at school. At school, he shouts loudly and doesn’t obey the teacher (she knows about his autism). He often spends his time wandering in the school garden. If he is asked to do his class work by being spoken to in a harsh tone (that becomes necessary), he does the work where he has to write in his notebook and doesn’t pay attention to what the teacher asks him to do. After he completes his class work, he moves out of the room and starts roaming about. If the teacher tries to catch him, he escapes her hold and does what he has in his mind. He attends the assembly (conducted before the classes begin) peacefully and enjoys when the children sing the anthem together. We are concerned about his attitude at school. ...Read More Show Less
Ans: Thank you for your mail and sharing some of your queries with us. It is wonderful to know that your brother is so skilled on the computer and is doing well in his piano lessons and other lessons at home. As you are aware, autism is a disorder in which the child attains milestones in a somewhat irregular fashion as compared to children who do not have autism. The areas that are most affected are the ability to communicate, connect with other people, and play. These areas are often late to develop, but more importantly, they develop in unusual ways. They can have can have difficulties both, in understanding communication as well as in expressing themselves. They may often do things which appear socially naive or unusual. This is because having autism means that they do not have the social understanding that the non-autistic person is seen to be born with. We who are non-autistic, learn social rules instinctively: asking the class teacher for help; knowing when and how to speak to a stranger; following through when the class teacher gives a general instruction to the whole class; making friends with the student on the next bench; knowing when to speak and when to give the other a turn. People with autism may have to be taught these in a systematic manner; they often have to learn such social rules cognitively. They may also be disturbed by certain sounds, or be distracted by everyday lights, textures or smells, or have other sensory issues. As I mentioned earlier, play, too may be difficult for our children, as you say is in the case of your brother, because it does require the understanding of social rules. Interacting with family members may just be easier for him because of the familiarity that he has with you and your understanding of him and his needs. A lot of children with autism may find it much easier to learn during individual work sessions than in a group situation. This is because learning in a group involves dealing with multiple perspectives, as in having to juggle quite a few things at the same time like listening to the teacher; attending to their books/ blackboard/writing down lessons; being in close proximity with other students; waiting; looking at something and listening to instructions at the same time, amongst a few; and our children may have difficulty in all or some of these areas, specially when they have to be attended to all at the same time. So you see, given the nature of these difficulties, despite being cognitively able, our children may find it difficult to cope in a mainstream school environment which is not structured to the needs of students with autism. It is possible that your brother is finding it difficult to sit in a designated place for extended periods, or may have some sensory difficulties. It could be a sound or a light or maybe the chair that he sits on that is bothering him. At home, when he is working with your mother, it is possible that his work area is relatively distraction free and his ability to pay attention and stay focused is easier. It may be possible that he is finding it difficult to understand exactly what is expected from him and is thereby finding it difficult to follow his teacher’s instructions. Further if his teacher is giving a general instruction, for example ‘Everyone, please stand up for prayer time’, your brother may not understand that the ‘everyone’ includes him too. However, when she raises her voice, she may be using his name or maybe through repeated instances he has learnt that it is when his teacher raises her
voice that he is supposed to comply with her instructions. As I mentioned earlier, attending to multiple perspectives may be difficult for our children, so when your brother is writing in his book, he may find it difficult to concentrate on the instruction that his teacher is giving him. He may not know exactly what he is expected to do once he’s finished with his work and thereby wanders off when his work is done. We need to remember that both waiting and making transitions between activities are often difficult for people with autism. It may also be possible that his peers tease him and he may not be able to tell anyone of what is happening but is getting anxious about the same. You would appreciate that the above are just some examples. Since we are not aware of the exact circumstances it would be hard for us to understand exactly what your brother is finding difficult in school and we may not be able to give you precise strategies to deal with the same. However, here are some general strategies that may be implemented in his school that may make things easier for your brother: 1. When giving instructions to the entire class, the teacher could use his name as an add-on once in a while, e.g., “Every one, X (your brother’s name), please take out your math book.” 2. Have your brother sit in a place where there are fewer distractions, e.g., maybe the first row 3. Provide him with a visual schedule which will help him understand what activity follows another, what is expected of him when he finishes his work and thereby give him predictability in his school day. His class probably will have the week’s lesson timetable. Your brother could have the current day’s timetable out on his table. 4. You have mentioned that he likes music. If the school permits, maybe giving him a walkman or an ipod to listen to once he’s finished his work may help him to wait for the next activity. 5. Interspersing his daily routine with activities of his interest like using the computer. Since your brother is good with computers, would it be possible for him to do some of his lessons on the computer? This would both help motivate him and thus encourage his learning. 6. You could request his teacher to speak to him in a clear, precise, direct manner, giving him the time and opportunity to process what she has said. 7. Providing him with additional visual cues which help him to understand other people’s behaviors, understand what is expected from him and thereby manage his own behaviors. 8. The teacher and you may want to discuss your brother’s autism with his peers so that they can understand him better and may even want to help him. It is important to remember to be positive when you do this, to mention his strengths along with his difficulties, because your perception and explanation of your .brother’s autism will reflect on his peers’ understanding of and future interactions with your brother.
Year published in: 2010
Q: Hi. My son was diagnosed two years back with Asperger’s when he was five years old. He didn’t have any speech issues, he started speaking in sentences at two. He is very brilliant in maths and reading, but lacks emotional maturity and Social Skills. He goes to general school without any support. He has one best friend and is happy in school with his best friend. Some of the difficulties that he faces are in following instructions. He is slow in following directions. If I give him 2-3 directions, then he will just do the first task and forget the rest. He would start doing something else. Another area of concern is his Self Care skills. He lacks self-care skills. We have to teach him same thing over and over. Like bathroom hygiene, wearing clothes. He will wear his pants and start daydreaming and forget wearing his t-shirt. Sometimes he would take off a t-shirt and wear the same one instead of the other one.
With regards play and leisure time, he does repetitive things like writing and piano during his free time. He lacks creative play and pretends play and cannot come up with new play ideas. He hates to play blocks or any other creative toys With all these issues, what do you suggest? Will AFA help him? Is there any other therapy that you would suggest would help him bring his skills to at least average level?
Ans: The issues that your son seems to be currently facing are quite typical in many children on the spectrum, given the nature of the condition. For instance, you have mentioned that he often has difficulties and is slow in following instructions. We do know that our children have difficulties in shifting attention (from something that they are already attending to, to something else that we may want them to attend to). Alongside, a lot of them also have difficulties and delays in processing information. Hence if we could make sure that we have the child’s attention before we give an instruction, it could help him to focus on what is being told to him better. One of the simple ways to do this could be to call out his name before we give an instruction. In addition, lots of practise at following instructions may also help. So, we could give the child may be two or three unrelated instructions (after getting his attention) several times a day and help him in following those instructions and of course reinforce and praise him when he is able to follow these through. We also know that people on the spectrum have difficulties with their Executive Functioning and with organizing information in their minds. Even those of us who are non autistic may at times have difficulties when we are given too many instructions. We may do a couple, forget the third, do the fourth and so on. But, with people with autism, this could be more pervasive as is often seen in their difficulties to follow multiple-step verbal instructions or for that matter completing a Self Care routine with multiple steps. This is often an integral part of their autism that needs to be understood and accommodated for. Accommodations can be made in all the environments that the child with autism interacts with through the use of ‘Structure’ and giving other visual supports. These accommodations are as important to a person with autism as are the accommodations that are made for people with other difficulties. So for instance, for the person who is visually impaired, we do not go around criticizing him if he bumps into objects. Instead we make accommodations by giving textured pathways, auditory cues etc. Similar ramps for the mobility impaired. Structure and visual cues are just as vital for persons with autism to function to their fullest potential, as are the ramps for those with mobility impairment or textured pathways, auditory cues etc to the visually impaired.
Structure and the use of visual supports, not only takes into account the difficulties people with autism have in executive functioning and their focus on details and helps them complete any activity/ skill/ chore successfully, but is one of THE key ways to foster independence in our folks. When we provide a system to our children using structure and visual supports, we see that they no longer need to depend on our verbal reminders, but instead can depend on a system, leading to a more independent way of functioning.
For instance, you have mentioned that your son will wear his pants and start daydreaming and forget wearing his T-shirt whilst he is dressing. In this case you may have to verbally remind him to wear his T-shirt, which may come in the way of his independence. Instead if you were to have pictures of his clothes given in the order in which he needs to wear them (a picture of the pant and then a picture of his T-shirt) and teach him to refer to this whilst dressing (somewhat in the manner that we refer to a recipe to make sure we do not forget one ingredient!) this visual could replace your verbal reminders. And once he has learnt to refer to this system, you could be elsewhere and it is this visual reminder that will help him to complete the sequence of steps required for dressing. When we use ‘structure’ and visual supports, it also provides visual clarity to our children as to exactly what it is that they are expected to do. This clarity and predictability helps bring down their anxiety levels (as would be the case with any of us) and helps them function with greater ease. This in turn helps them to be more successful in the skills that they have greater difficulties with, like interacting in social situations, in playing with peers or in keeping themselves occupied in their ‘free time’. So, one can also use ‘structure’ and visual supports to teach a variety of skills including social and play skills. I have personally used structure and visual supports as a parent and as a teacher with incredible results, so much so that I often use the term ‘The magic of structure’. Good luck with your son. He sounds like a wonderful young man and all the very best to both of you. The responder is Indrani Basu, Co-ordinator Parent Child Training Program at Action for Autism.
Year published in: 2012
Language and Communication
Q: My Daughter V is four years old and is progressing well with her skills. She started to learn to communicate with using the PECS, but now has started speaking in small phrases like “Let’s go out” or “Where is the bottle?” etc. However we have some concerns about her and would want some guidance on these. V does not ask questions except for the “where” (where is papa/doll/bottle) type of question. She does not ask the “what” and the “when” questions. How can we help her?
ANOTHER difficulty we face is whenever V comes home from school, if her father or grandmother come out calling her name, she gets irritated for some time and runs to mother. Even at her grandmother’s home, if her grandmother opens the door or calls out for V, she gets very upset. Please help me in understanding this.
Also V doesn’t run around the house nor is she on the move all the time. She is very active in a constructive way and occupied with meaningful work, so how do I judge whether she is hyperactive? V has still has not got the grip of holding a pen/pencil. What should we do? Right now we are giving her big Faber castle crayons for scribbling, she likes to draw straight lines, circles, ovals etc. Is it too early to introduce writing habit? What should we do?
Ans: Thank you for writing to us. It is wonderful to know that V is making good progress and it is evident that she has an accepting and supportive environment that is helping her do so.
ASKING questions is often difficult for people with autism. The ‘where’ question comes the easiest, because they are related to satisfaction of some kind of a tangible need. So often a ‘Where is the bottle?’ is asked because we want the bottle, ie we have a need to be satisfied. However, the ‘what’ question is more complex, the ‘when’ even more so, and the ‘why’ the most. So we tend to start teaching the child to ask the other ‘wh’ questions after s/he has a reasonably good repertoire of language, both with regard to understanding language and expressing oneself. That would include expressing needs, following instructions, identifying and labeling (naming) objects and pictures of common objects, of things in different categories like fruits, animals clothing, modes of transport, identifying and labeling (naming) objects and pictures by their categories, functions, features, attributes and so on.
ONCE the child has a reasonable repertoire of all of these, we begin teaching the other ‘wh’ questions. WHILST teaching our children to ask ‘what’ questions, we get them to label/ name various things/ pictures that he is familiar with and whilst doing this we present a picture of something the child has not seen before and does not know the name of, maybe the picture of a gas stove. As soon as we present the picture, before the child says anything, we could prompt the child to ask, “What is this?” and then we answer saying “Stove!” or “This is a stove/ gas stove”. This could also be done in the environment, when she’s at a park or out for a drive and you see her attending to something she does not know the name of. For instance, if you see V looking at a fountain and you don’t think she knows what it is called, you could prompt her to ask “ What is this?” and answer her saying “This is a fountain”. It would of course be necessary to praise and reinforce her efforts. FOR ‘when’ questions, we could start with teaching through reinforcing events. Say, the child likes to eat ice cream and she usually asks you for it by saying “ice cream” or “I want ice cream”. If you have decided to give her icecream on the way to the park in the evening, you could use the opportunity to teach her the ‘when’ question. So when she does ask you for the ice cream, first acknowledge this request by saying: “I know you want to eat ice cream.” Then prompt her to say “When will I eat ice cream?” As soon as she repeats the question give her the answer “We will eat ice cream on the way to the park.”
THERE are two things we may want to keep in mind here. At this point of time, we may want to keep the answer related to something very tangible, a routine that the child is familiar with and can relate to. We can get the concept of time later into the ‘when’ questions, once the child had learnt the time concept. Secondly, when we are teaching the child to ask a ‘when’ question about a reinforcing event, it is best that s/he does not have to wait too long for the event to take place. So in this case, since she will eat the ice cream in the evening, the afternoon may be a better time to prompt her to ask the ‘when’ question, instead of the morning. You mention that whenever V comes home from school she gets irritated for some time and runs to her mother if her father or grandmother come out calling her name.
I am assuming that this happens only after she has just come back from school and then after a while she tends to settle down? If that is the case, it could be that she is seeking a comfort zone after her time at school, and her mother may be that comfort zone. School can be quite demanding for a lot of our children. They are expected to behave in certain ways, follow social rules, follow basic instructions, stay in their seat etc. Whilst a lot of these may seem rather simple for most of us, these could be herculean tasks for our children for which they have to put in a great deal of effort. So, once school is done the child may need some ‘wind down’ time when she is back home. At that point of time any demands real or anticipated could be extremely stressful. Further a lot of our children also tend to pair the ‘name call’ with an upcoming instruction. And that may also be the case with V. So, when she does come back from school, maybe a simple ‘hello’ would suffice and then she be allowed to do whatever she needs to do to ‘wind down’. It may be best to interact with her after a while, when she is more relaxed and ready to interact with others. SINCE you say V doesnot run around house and is also not ‘on the go’ always, it may be fair to assume that she is not ‘hyperactive’ in the medical sense of the term.
From your mail, I sense, that she can sit and attend and do meaningful work. A child who has a diagnosis of ‘hyperactivity’ would find it difficult to sit and attend to most things, including motivating tasks like maybe eating a snack, doing a puzzle the child is interested in etc. Since that is not the case, it is unlikely that the V has ‘hyperactivity’. There is a difference between an active child and an ‘on the go’ child with autism who does not know how to occupy herself during free time and one who has a diagnosis of hyperactivity.
YOU mention that V likes scribbling with crayons. That is wonderful! You may also want to work on her pre writing skills. There is a very useful piece on ‘Handwriting difficulties in children with Autism’ that was published in the August 2009 issue of Autism Network, the AFA journal: (http://autism-india.org/sites/ default/files/August%202009%20Vol.%20IV%2C%20No.%202.pdf).
You may find some helpful tips there.
TEACHING a child with autism can be confusing.
Hope this addresses some of your concerns. Also, we often conduct workshops to help parentsunderstand autism, the unique learning needs of their child, as well as appropriate strategies to help them reach their potential. Do keep a check on our website www.autismindia.org for the same.
Year published in: 2015
Q: Our 15-year old son has autism. I have noticed a difficulty in his speech right from the time he started uttering sounds. He has a difficulty in uttering the sounds of ‘k’, ’ kh’, ’ g’ and ‘gh’. Now when he recites lines of poetry from memory, we see that he has a hesitation in doing so, and feel that perhaps this is because of the presence of the ‘k’,’ kh’,’ g’ and ‘gh’ sounds there. He recites haltingly, but he does not say he has any pain or such other thing. His speaking otherwise is normal as far as his condition allows. His eating habits and patterns are absolutely normal. Is the problem mentioned likely to be very serious concerning his vocal chords — something to worry about and worth examining by a specialist? Ours is a small place without such specialists. Please advise what we may do now. ...Read More Show Less
Ans: Speech difficulties are common in verbal individuals with autism, this may be partly due to reduced ability to ‘tune in’, listen and process sounds in the environment. In addition to this, people with autism sometimes feel less social pressure to have their speech match the speech of others. Is your son aware of his speech difficulties? The four sounds that you mention are made in the same place in the mouth and using the same process. This means that your son’s speech difficulties are unlikely to be due to a serious medical issue. It is more likely that when you son was younger he did not tune into these sounds and has now developed a habit of producing these sounds in an atypical way. He has articulation difficulties. How does your son produce these sounds? Often individuals make these sounds at the front of the mouth rather than the back of the mouth so the sounds are replaced with ‘t’ and ‘d’. Since, presumably, you do not have access to a speech and language therapist locally, perhaps you could check out this website. http://speech-language-therapy.com/index.php?option=com_content&view=article&id=11&Itemid=117. In particular you may find the Resources and Word List section helpful. I am unsure about your son’s language level so not all activities may be appropriate. (The responder is Maeve Mc Cutcheon, Speech and Language Therapist at Action for Autism)
Year published in: 2012
Q: I have just visited your website for the first time and found it very informative, making my experience a very exciting and fulfilling one. I’d request you help with some difficulties that R, my 7 year old son, diagnosed with autism is facing. He doesn’t mingle/ play with others, but he does play a little with his elder brother. When he is free he plays by twisting on floors and hitting at his jaw with objects. R doesn’t speak frequently and expresses his need only by questioning like saying “Do you want water?” when he wants water. After his 5th birthday (last year), much to our surprise and satisfaction, we noticed some special skills in him i.e. with some moral support (by holding his hand at wrist) he can write English, Hindi, Malayalam, Tamil (alphabets, words and even answer the questions we ask), do mathematics (addition, subtraction, multiplication & division) without anybody teaching him these skills before. This was also witnessed by his special school teachers & occupational therapist. But his level of interest is very low on these skills. ...Read More Show Less
Ans: It is a pleasure to know that you found our website useful and we do thank you for sharing your thoughts with us. We appreciate the concerns that you have about R and will try to provide some general strategies that may help with some of the issues that you have mentioned. Autism is a neurological disorder in which the areas that are most affected are: the ability to communicate, which includes both understanding of language and using language to communicate; the ability to understand social rules and interact with others; and differences in thought and behaviour, where our children have a different way of perceiving the world, a different style of learning and difficulties in developing age and socially appropriate play and leisure skills. These areas are often late to develop, but more importantly, they develop in unusual ways. Further there is also a level of unevenness in the development of skills, for instance some children may have extremely good gross motor and fine motor skills, but their ability to play with others may be at a very nascent stage. Many children with autism also have different ways of ‘sensing’ their world. For example, some children may find bright lights very distracting; some may shy away from a gentle touch, but be comfortable when held firmly. Some may like to rock or can spend hours on a swing. Extreme likes or dislikes in diet could also be part of a sensory defensiveness. This difference in ‘sensing’ the world is often one of the reasons for the ‘unusual’ behaviours seen in children with autism. For instance, when you mention that R likes to hit himself on the jaw with objects, it is possible that he is actually seeking pressure on that part of his body. Or when he rolls on the floor, he could be finding the rolling motion and the pressure that the rolling provides his body pleasurable or he is seeking the ‘feel’ of the floor. Though your occupational therapist will be better equipped to suggest strategies for fulfilling R’s specific sensory needs, some of the strategies that you could try are to give R a firm massage all over his body and along the jaw area. You could also teach him to cup his own hands around his jaw and press hard, so that he can replace his behaviour of hitting his jaw with objects with a more socially appropriate behaviour. Asking him to lie down on a blanket and then rolling him tightly in it may also help. He may also like to be placed in between cushions like a ‘sandwich’. All this could be done in a fun playful way. Playing and interacting with peers is a key area of difficulty with our children. This is because playing with peers involves a lot of skills like waiting, turn taking, understanding the rules of interaction and of the games, being ready for quick changes in a game, anticipating what his peers may do, all of which our children have a degree of difficulty with. His brother may be able to anticipate some of R’s needs, just like R may be able to anticipate some of the rules of the games that he plays regularly with his brother, making this interaction easier and more comfortable. Further given the fact that our children have difficulties in using their imagination in play, play which provides sensory stimulation may be preferable to a lot of our children in the early stages of play. Teaching our children to play with their peers, to take turns, to share, will have to all be taught in concrete, literal ways through structured games with making the rules of the interaction, the games very clear and predictable to begin with. It is of course very important that we keep the interaction time an exciting and fun time for the child, one that he can look forward to versus being anxious about. You have also mentioned that R expresses his needs by questioning. What happens in a lot of verbal children with autism is that they process language in chunks and use it in similar situations in exactly the way they have heard in the past. So for instance, in the past it is possible that R has been asked ‘Do you want water?’ and then has been given water to drink.
R has learnt that entire chunk of language and every time he needs water he repeats this entire chunk he has heard in the past when he has wanted water. This is also seen in very young neurotypical children who are just learning to speak, but unlike our children they outgrow this phase and learn to use the language from their perspective. For our children, it is a good idea to speak from their perspective, as in use exactly those words/ sentences that our child would use in a given situation, if he could speak. So we become our child’s ‘voice’. So for instance if R wants water, you say “water” or “give water” or “I want water” depending on whether R is at a ‘word/phrase/ sentence level’. If you are
sitting down and he pulls on your hand, then you say for him “Papa come” and then get up. Or if he wants you to open something then you say for him “Open” and then open it. If he wants to pass by someone who is standing in the way, you say “Excuse me” for R and then let him pass by. It does not matter whether he repeats or not, we just say what we want our children to say and then over time they may learn to use this chunk of language in similar relevant situations. It is wonderful that R seems to be picking up writing and math without any formal teaching. This has been noticed in some children with autism. It is a great skill to pick up, though the two things that one would need to keep a focus on is working towards independence and keeping the motivation to write high, especially since, in addition to helping with academics, writing can also be an excellent mode for our children to communicate and express themselves. You have mentioned in your mail that R does not find writing very interesting. We could try to find out try to find out what it is about the activity that he doesn’t like and work around that particular aspect of the activity. For instance, say you are working with R on his writing skills and you notice that every time you ask him a question, his motivation levels seem to drop, but he is more inclined to do his math. In that case, maybe for now, you want to stop asking him questions for a few days and just concentrate on the part of the writing activities that he seems to enjoy and praise him and reinforce him for writing. You could reintroduce asking him questions after a few days, starting with just one question that he has to answer. In the beginning you may want to stick to the questions that he finds easy to answer. Once he has answered the question, do remember to reinforce him very well. You could slowly increase the number and complexity of the questions that you ask. But it is a good idea to keep the activity short per se, so that R’s motivation and attention levels can remain high and please remember to always reinforce and praise him for his efforts. This is just an example for you to be able to adapt to situation relevant to R. Further, giving R some kind of visual clarity as to exactly what kind of writing work he has to do and how much of it he is supposed to do may also help. So, you could have a mini timetable of sorts which lets R know exactly how many sums in addition or subtraction or how many questions he has to answer and so on. In addition to the above, it would also be important to reduce the support that you are providing R so that he is able to complete these activities independently which would also contribute towards increasing his motivation levels for the activity. So you could slowly try to reduce the support you are providing R on the wrist and then move the support to his forearm, then to his upper arm, then to his shoulder to the point where he can write independently without any support whether physical or verbal from you. You may need to make the level of the tasks very easy to begin with as you reduce the support at every stage. You may also want to read an article on ‘Handwriting difficulties in children with autism’ published in the August 2009 issue of the Autism Network :(http://www.autism-india.org/aug09.pdf.)
Year published in: 2011
Medical Concerns and Medication
Q: The newspapers some years back reported the case of a child with ASD who had been taken for some tests to a public hospital in Mumbai, where he was administered general anesthesia (GA). The child was sent home after the tests but before he gained consciousness. The report said that the child never became conscious and died on his way home. What are the standard medical procedures to be followed when GA is given to a patient? How does a parent ensure the medical safety of his/her child in medical situations of which the parent may have little knowledge? ...Read More Show Less
Ans: Children and adults with ASD often need General anesthesia (GA) for certain simple as well as prolonged procedures. This may needed for a variety of reasons: it can be because of a difficulty in following instructions, sensory issues, unexplained fears, the new unpredictable hospital environment and people; and for a variety of procedures where it is essential to remain still and immobile and sometimes follow instructions such as for EEG, CT scans, MRI scans, dental work, and BERA tests among others. Regardless of the complexity or simplicity of the medical procedure for which the child has to go under GA, the usual rule of preparation has to be followed, and of which the medical practitioner will inform the parents. Nil Per Oral ( NPO) has to be ensured, which means that the patient stop taking any food 6-8 hours prior to GA, stop taking milk 4 hours prior to GA, and stop taking all clear liquids 2 hours prior to GA. The patient undergoing the procedure has to have sound health along with good chest and heart condition and be considered physically fit for the procedure. Even if a patient has a common cold it is considered safer to postpone the procedure unless it is an emergency case. Patient has to also undergo pre-anesthetic check-up by a licensed Anesthesiologist. The query states that the child was unconscious when handed over to the parents and even taken home in that condition. In GA it is very important that the patient is fully conscious before he gets to ambulate from hospital. This is mandatory. The reason for this is that when the patient is deeply sedated they may fail to maintain certain reflexes related to respiration and swallowing. So, in a deeply sedated condition blunt reflex might lead to airway obstruction or choking. The signs and symptoms of airway obstruction which might be unnoticed or not understood by the lay person, could lead to deficiency of oxygen and eventually to death. So, always make sure the patient is fully awake before leaving the hospital.
Always ask your Anesthesiologist when they can start oral intake and get permission from them to leave hospital. This could stop many disasters in such kind of day-care procedures. Most parents of children with ASD know the difficulties with any kind of medical checkups: from letting the doctor visually check a sore throat, the dentist to check a toothache, to taking a regular injection or blood test. Because neither medical professionals nor parents are byand-large equipped to help prepare and settle down the child with autism before a medical procedure they are often forced to resort to GA as the first course of action. It is important therefore that before going in for GA parents inform themselves of the risks involved, and ensure that the physician involved is informed of the child’s history, including any seizure history, as well as ensure the presence of an Anesthesiologist. (With inputs from Dr Sunita Amatya)
Year published in: 2011
Q: I have a nephew who is nine years old and he has autism. It is said that it is because of vaccination that children have autism. My nephew doesn’t talk and we are all very worried for him. I have another question. Do these children live for a normal life time or do they die soon? Please tell me this because it is a very important question for me. ...Read More Show Less
Ans: Thank you very much for your email. First, I think it is wonderful that you are involved in your nephew’s life and can provide support to his parents. As you have no doubt seen, there can be many challenges along with the many rewards of having a child with some type of special need. You mention the issue of vaccinations. You are correct that there was a period when the scientific community was uncertain about the relationship between receiving vaccinations and having autism. There are still some people who believe in this connection. However, due to the lack of valid scientific research supporting this, it is increasingly viewed as an incorrect attribution for the cause. Current studies have in fact disproven this theory. As you know, there are literally millions of children who receive vaccinations and do not have autism, and many children with autism who in fact never were vaccinated. I hope this information will help your nephew’s parents understand that autism is not something they have caused through any of their actions. You asked also an important question about life-span. There is no reason to believe your nephew would have a shortened life-span due to his autism. I’m sure this may cause some anxiety if you are uncertain about who will care for him after people of your generation have passed on. This is of course a concern shared by parents the world over. At AFA, we try to help parents focus on teaching skills and communication abilities to the maximum degree possible to foster independence. As society changes, there may be more facilities that develop to help with this process, and your nephew is still young. Some families are working with one another to develop these locally, as well. And there are laws (such as the National Trust Act) that can help in this regard. If your nephew is not already receiving services, perhaps we can recommend something in the area where he lives.
Year published in: 2010
National and International Autism
Q: I am a diplomat with an 11-year-old autistic son. We are currently on a 2-year tour of duty in the US, but will soon be sent overseas again and are looking for the best countries for autism education. I read with interest your list of international autism organizations. Thank you for compiling such a useful list! Do you have, or are you aware of, any reports that rank countries by the quality of their autism education? ...Read More Show Less
Ans: You have asked an interesting question for which I am not sure that there is an easy answer. To the best of our knowledge, there is no study on the quality of autism education in countries.
There are several variables that I imagine you will have to consider. For instance, is your child included in a regular classroom or does he attend a special needs classroom? If he is in the former, what kind of accommodations does he require for him to be able to learn better and to keep his schooling a positive experience? In addition, does he require the additional support of backup services from a good therapist to bolster all that he is learning at school, as well as teach those concepts for which he may need specialised inputs? If this is the case, then you may need to look at a country where there is ample emphasis on inclusion, and alongside there are those add on services available either through the school itself or through external facilities.
If your son is in a specialised set up, the variable to consider there would be the particular intervention strategy that he learns best with. Whilst there are services in some countries that use a combination of strategies that are considered to be ‘best practices’ for autism internationally, like the Structured Teaching, ABA, VBA, and tailor the programme to the specific strengths and needs of the child in question, there may be others which use only one such intervention strategy.
Given all these factors, I am not sure if there is any country where every service is of the same standard. The percentage of good quality services in each country varies; some higher than others. Of course, there would be countries where the number of organisations/professionals providing services to individuals with autism may be greater, making those services more easily accessible. However, to reiterate, the quality of services may again vary across organisations and / or professionals. The key to ‘good’ education for individuals with autism may often be understanding the condition, understanding the unique ways in which children with autism think and learn, accepting their autism as a vital, vibrant part of their being and then approaching the intervention, the teaching of skills, and / or changing of behaviours, from that paradigm of understanding and acceptance. What your son would need is a service that has a rock solid understanding of autism, provides students with structure and predictability and uses good behavioural principles in the teaching.
Hence you may need to widen your quest a bit more: in addition to looking for a country which provides good quality services to individuals with autism, you would also need to delve into the quality of services that are provided by the organisations and professionals in question.
Unfortunately, there are no precise answers that we can give to this particular question. But, we do wish you the very best in your search.
Year published in: 2014
Q: I am writing from the UK. We have a client that may be returning to India to live with grandparents and would like to know if and how a child with autism can be integrated into main stream school. Is mainstreaming a popular option in India? Do autism specific agencies provide support to the child in the mainstream? We would also appreciate if you could give us the details of the schools that would mainstream a child with autism and also of some Early Intervention programme. ...Read More Show Less
Ans: We are aware that any move of locations can be difficult, more so for persons with autism and their families, because there may be so many parameters involved. We do hope that this transition will be a smooth one for your client and the family. Regarding services available in India, it is difficult to answer in generalities given the sheer geographical size of the country. There are various organisations that provide a range of services to individuals with autism across India. If we could have an idea of where your client would be situated we could try to provide you with the details of the organisations the family could contact locally for more information. In the meanwhile, you may also want to look through this url: http://www.autism-india.org/afa_otherlinks.html. It has a reasonably comprehensive list of services available across India for people with autism. I am sure that some of these organisations work with mainstream schools to provide for inclusion for people with autism. Some of them also run early intervention programmes. For a more detailed understanding of the exact nature of services/programmes offered by any one of these organisations, you may need to get in touch with them directly. Inclusion of children with autism in India is still in its nascent phase, largely because of a paucity of professionals trained in autism, often making it very difficult for the mainstream classroom and class teachers to understand and provide for the necessary accommodations that are essential for inclusion of the person with autism to be successful. However, there are mainstream schools across the country that is equipped to include children with autism. This ‘inclusion’ may be facilitated in a variety of ways: with the child being in the classroom with his neurotypical peers with or without a shadow, depending on the needs of the child and / or the school policy; or the child being in a resource room with a special educator and going into the mainstream classroom for specific activities; or the parent going in with the child and the child remaining in the mainstream environment for a specific amount of time with the parent as the shadow, etc. However, as mentioned earlier, for an exact understanding of what a school can offer, one would need to interact directly with the school in question. With regard to autism specific organisations providing support to the child in the mainstream, again there are such organisations across the country. At Action For Autism, we liaison with some mainstream schools and provide support to the school in making appropriate accommodations for a child placed with them. Simultaneously we work with the child on a one on one at a separate time to buffer his social, communication and cognitive skills, and to facilitate his learning in a group. In addition, we also offer the ‘Bubbles’ programme which is specifically targeted towards helping children with autism learn specific skills that are required to function better in an inclusive environment.
Year published in: 2013
Q: My son is two and half years old. He is non-verbal. He loves eating. Amongst some of his favorite foods are cakes, biscuits, chips, paneer, etc. He also loves drinking Frooti and other tetra pack juices. But we don’t give him any of these foods/ drinks since he is on a GFCG diet for the past six months. We are just starting therapy for him and his therapist feels that it may be a good idea to use some of his favored edibles to teach him. He is not interested in playing with his toys at all. Should we allow his therapist to use these foods and take him off the diet? Please advise. ...Read More Show Less
Ans: Your question is a familiar one. We often come across families who want to or have already put their child on GFCF (Gluten free Casien free) diet and are confused about the effectiveness of the diet for their child.
As you must be aware, a GFCF diet is recommended by some professionals, under the premise that gluten and casein (proteins present in wheat and milk product respectively) may not be properly digested in people with autism. This incomplete digestion may result in some autistic symptoms that mimic an ‘opioid like’ effect on the central nervous system (for example lowered sensitivity to pain). Some ‘hyperactive’ behaviors are also attributed to gluten and casein intolerance. However, the dietary method is still at an experimental stage and no promise is made for positive results. In our experience a few families who have tried the GFCF diet feel it may have helped in their child’s progress, but the changes are often reported to be small ones. In addition, they are not sure whether the progress can be attributed to the diet, as the children were also receiving other interventions at the time when the diet was implemented.
When parents ask whether to start their child on a GFCF diet, we caution parents that the diet may or may not help. In the event that it does then too they must not expect a miracle. We also advise parents that before putting the child on a GFCF diet they have a discussion with a physician as well as a nutritionist, to ensure that when gluten and casein are removed from their diet, the child continues to have a balanced diet. This ensures that the general health of the child is not impacted, since a lot of children with autism already have extremely restricted diets given their sensory difficulties and resistance to change. We also suggest that at least a month before starting the diet, parents to start keeping a record of the child’s communication, social and other behaviors. Also, when starting the diet, to make sure that they are not starting any other therapy or intervention around the same time. Once the child in on the diet, we suggest that parents continue to record the behaviors. Since our children will show some improvement/ developmental changes anyway as they grow, parents need to note if there are significant and exceptional improvements/ changes. Improvements have to be significant and much beyond the normal for them to be credited to the diet.
When deciding on any kind of intervention/ therapy that we may want to try with our children, it is also very important to understand that they have very different learning styles. They may have difficulties, both in understanding communication as well as in expressing themselves, and in understanding social rules. They may often communicate in a socially inappropriate manner to get their needs met. They appear ‘non-compliant’ or ‘badly behaved’ when in actuality they may have had difficulties in understanding what they are supposed to do. And hits can seriously impact their progress and quality of life. So, it is extremely necessary that any work the child, especially with the early learner, has a primary focus on teaching communications, foundational skills that can be built upon to teach self-help, cognitive and other skills, as well as help the child enjoy social interaction and understand social rules. But for any learning to happen, motivation is vital. And we do know that people with autism may not be socially motivated. We, who are non-autistic are highly motivated by what other people think and say about us. This is because we have the ability to ‘read’ other people’s mind perceive what they are thinking and change our behavior to do things that they would like us to. But, the child with autism often has difficulty in reading peoples’ mind and thoughts. This results in their not being motivated to do things just to please others. For instance, a five year old neurotypical child will want to learn new things because he has the ability to understand that his parents and teachers will think well of him and hence it is a ‘smart’ thing to do. But for a 5 year old child with autism this may not be motivation enough. He may need highly desired items to help him learn and to make the learning enjoyable, especially in the early stages. Of course, this need not be the practice for the rest of the child’s life. It is possible that these are the factors that your child’s therapist has in mind when suggesting that she uses edibles and drinks he favors to help him learn better. The decision to continue to keep your child on the diet would have to be a personal one. As parents we want to try out every therapy that might have even the minutest possibility of helping our child. But, it is equally important to strike a judicious balance to ensure that the child is also learning communication, social, cognitive, self-help and other skills that are going to be of lifelong benefit to him.
You have mentioned that your child has been on the GFCF diet for 6 months. Have you found any significant changes in his learning and behavior after having started the diet? If the answer is negative, then you may want to consider the value of continuing the diet. For the next three months you could gradually start introducing edibles containing gluten and casein one at a time, and keep a detailed record of his behavior. If you do not see any major loss in his learning, one may conclude that GFCF diet is not necessary for your son. Once you discontinue the diet it would be a good time to start with the interventions. If you see some gains in his behaviors and learning it would indicate that the intervention and not the diet that is responsible for the gains. On the other hand, if you feel that there have been significant improvements in your child specifically due to the diet, you may want to continue the diet with your child and look for GFCF edibles and other non-edibles that may motivate your child to learn. This could be anything that he likes doing: tearing paper, water play, playing with wrappers, rubber bands, running around in circles, rocking or any other activity that your child may seem to like.
Irrespective of whatever you decide, do ensure that you are keeping the learning process enjoyable and reinforcing so that your child remains motivated to keep learning.
Year published in: 2015
Other and general advice
Q: I live in Georgia, USA. I have two sons with disabilities. My older son is 8 years old and he has both a mental and physical disability since he was born. My second son is 5 years old and has a diagnosis of autism. I read the Autism Network and I wanted to know how it is to raise a child with autism in India. What kind of medical services are provided for children with autism? How does society treat them ? Can they go to regular school or not ? I wanted to know your experience and your opinion on these questions? I would appreciate your help. ...Read More Show Less
Ans: Thank you for your mail. It is always a pleasure to interact with a fellow parent. I too am a parent of a child with autism. I live and work in New Delhi. My son, V, was diagnosed with autism at the age of 3 by the therapists in Action for Autism way back in 2000. He is now nearly 15 and has been attending the special needs centre there for the past several years. In answer to your question, ‘How is life with a child with disabilities in India?’ Well, that is difficult to answer. For persons like me who are well educated, living in a large metropolitan city, with comfortable access to information technology, I can say that things are improving. In the medical fraternity, especially amongst psychiatrists, psychologists and pediatricians, there is some degree of awareness about autism and other developmental disorders. This has led to both an increase in, as well as earlier diagnoses of these conditions in some cases. Many schools are now opening their doors to children with disability; disability specific NGOs and parent support groups are also making it possible for us to find alternatives for our children. At the policy level, the Government of India does have far-sighted policy recommendations and legal provisions in line with the UNCRPD. However, there is often a slip between the cup and the lip and the implementation of these recommendations and policies leaves much to be desired. As far as public attitudes are concerned, there is still widespread ignorance about mental disabilities in particular. Conditions like autism are still quite unfamiliar to the ‘aam aadmi’, but slowly, awareness is increasing, particularly on account of media, television, films etc.
One of the biggest issues we families face is lack of a social security net, adult residential homes etc which would provide the necessary support to our children when we are no longer there to be with them. The family support we could traditionally call upon is dwindling, and there is no reliable substitute available as of yet. However, I am confident that the efforts of committed activists and stake holders will change this reality too. I hope this answers some of your questions. Wishing you and your family all the very best.
(Answered by Dr Shubhangi Vaidya).
Year published in: 2012
Q: My son does not play with toys. I have been told that children with autism do not play with toys in a manner that the toys are supposed to be used. In that case, should I give my son any toys to play with? ...Read More Show Less
Ans: It is true that children with autism often do not play with toys, or do not play with them in the way non-autistic children do, or in the way toys were intended to be 'played' with. They may take them apart, bang them, line them up, fling them out, or explore them with their mouth and tongue- long after the stage of mouthing and exploratory play is over. Some might engage in age appropriate play with a toy, though the routines might be repetitive and without growth and variety. Children know instinctively how to 'play' with a toy or otherwise. But children with autism may often have t be 'taught' how to play, and this includes how to play with a toy appropriately. But that does not mean we do not give our children toys. Even when a child does not 'play' with the toy appropriately, a skilled therapist or an observant parent can ascertain what kind of toy and what aspect of that toy might appeal to the individual child and in what ways the child might enjoy manipulating the toy. If the adult is able to gauge and understand in what manner a particular toy motivates an individual child, then even if we do not use that toy in a manner it was created for, it can be used as a 'tool' to make learning a more enjoyable experience. It is a commonly associated fact that most children with autism are often not socially motivated to learn new skills. Yet children learn best when they enjoy the process of learning, when learning b itself is motivating. When teaching is coercive it is difficult to sustain the child's interest. If there is something-in this case a toy-that appeals to the child, then that can be used to entice the child to learn. A variety of toys that appeal to the child can be used to help begin and to continue to enjoy the learning process. Of course, for some children what is appealing may not be a toy at all! It might be something completely different, like music, a physical activity, a picture book, or a sparkly ribbon! Children can learn to ask for the item appropriately, learn to identify the object, learn to follow instructions, learn to describe the item. In the process they are learning to communicate as well as improving cognition. Toys can enable children learn a great many skills. You could take your child to a toy store and observe your child to see what kind of toys appeal to him. Keep introducing your child to toys.
Year published in: 2013
School Related Concern
Q: Hi, I am writing from Lucknow. My son is five years old. He was a caesarean delivery and everything was normal at the time of birth. He started crawling at 8 months and walking at 16 months. He was hardly speaking one word while he was approaching two year mark. We were all worried and we even thought that there was a hearing problem. We then went to the speech therapist who asked us to do an IQ assessment. We did an assessment and the IQ score was 80 which suggested low IQ. The therapist then suggested an educator who visited us and told us that he is autistic. This was when my son was two and a half years old. The educator advised us to put him into a play school and we did that. A started speaking each and every wor d after joining the play school. His speech was quite clear, though sometimes he was not able to express himself. Currently, A is in a mainstream school in nursery class. He is an average performer. There are problem areas that he is facing but is slowly and gradually developing. I made him repeat nursery in the mainstream school though he was promoted to lower prep with the play school that he was attending earlier. I have also been doing his OT at home and a special educator cum tuition teacher comes over home to give him additional input. As I mentioned earlier, he seems to be progressing. We may be moving to Delhi, soon and would be obliged if you could guide me with regards to his schooling and other services. I also have another query. A repeats everything that I say. I have heard that this is known as echolalia. Can you also guide me as to how I can work with A’s echolalia? ...Read More Show Less
Ans: Thank you for writing to us. It is wonderful to have read about A and was also good to learn that A is receiving therapy and developing important skills. Children with autism can learn and develop significantly when the methods used are appropriate and geared to the individual child. You have mentioned that you may be moving to Delhi soon. Since, A, is already going to a mainstream school, you may want to explore some mainstream schools that A may benefit from. In Delhi, the admissions in mainstream schools start by January. We do have a list of some mainstream schools that include children with autism. You may want to send an email to firstname.lastname@example.org should you want a copy of the same. The environment of the school plays an extremely important role and hence it is imperative that the school A goes to respects differences and has sensitized teachers who understand the different needs of a child with autism.
It is also important to remember, that, for A to get the best from an inclusive environment, specialised teaching must occur side by side. He will have to be taught to attend, follow instructions and to generalise. Any work with A will have to focus on teaching communication which would include understanding the language of others, requesting for items, activities and information, expressing self, on imitation skills and helping him enjoy social interactions and understand social rules. Alongside it is important to work on activities of daily living. Consistency in teaching, clarity and clear structure will help A learn better. In addition keeping the methods of teaching concrete and learning experiential will ensure that A understands concepts rather than just ‘rote learn’ them. To sum up, he will have to be taught to ‘learn to learn’. Amongst other programmes, Action for Autism has an outreach program that you may want to avail. This will help provide A the support mentioned earlier that he requires. In addition, the url:http://www.autismindia.org/afa_otherlinks.html has a reasonably comprehensive list of services available across India (including Delhi) for people with autism. For a more detailed understanding of the exact nature of services/programmes offered by any one of these organisations, as well as any mainstream school you wish to explore, you may need to get in touch with them directly. In your mail, you have mentioned that A is echolalic. Echolalia occurs as a part of ‘normal development’ in all children between 18 and 36 months, after which most typically developing children tend to outgrow echolalia. But, it is often seen that children with autism continue to display echolalia even at a later age. Echolalia plays an important role in the development of neurotypical children. By reproducing what they hear adults say, they learn to pronounce words, form sentences and increase their vocabulary. It also keeps the dialogue going between the parent and the child and the child learns that conversation involves turn taking. Once the child learns to express himself independently, echolalia gradually disappears. Echolalia, in children with autism, is a strength that can be used to develop their communication skills. Hence, we can use A’s echolalia to help him learn to express himself.
For instance, you want A to answer with “Red”, when asked “What is the colour of the apple?” You can ask the question, “What is the colour of the apple?” And before A can ‘echo’ (repeat) the question “What is the colour of the apple?” you say “Red!” so that it is the “Red” that he ‘echoes.’ The exchange will sound something like this: Parent: “What is the colour of the apple?” “Red”... A: “Red”. Echolalia can also be used to increase A’s vocabulary and the length of the sentences he utters. When A needs water or an eraser you can make him you could teach A to echo (repeat) functional phrases like “Can I please have some water?” or “Can I borrow your eraser, please?” In this way A can learn new ways of requesting for items. It is important to remember not to discourage echolalia as children use echolalia to communicate their needs. When he wanted to go out, a child used a delayed echo of a phrase commonly used by his teacher and said “Time to go out and play”. His teacher who was standing in the vicinity reacted to the echoed phrase as a request to go out and immediately said, “Want to go out.” The child repeated “Want to go out” and the teacher at once allowed the child to go out and play. Here the child learnt to use a novel phrase to appropriately ask for playtime. Sometimes when a person with Autism is bombarded with too much language, echolalia can be used to ‘decode’ what was said, just as we do too. Often times, we too, tend to repeat other people’s phrases during a conversation when we are not sure we fully understood the conversation. For example, when someone says:“Where did you go last summer?” to buy some extra time for retrieval we may say “Let me think, where did I go last summer? Oh, Kerala”.
Speaking clearly in simple sentences with an emphasis on the key words will reduce the ‘verbal overload’ and help A understand you better. In addition, working on A’s communication as suggested earlier will help in generating novel, spontaneous utterances and decrease his dependence on echolalia. When someone says “It’s going to rain today”, we echo words as a kind of confirmation “Surely, it’s going to rain today” or “You bet’ it’s going to rain today”. Similarly echolalia can be used by a person with autism to get your consent. So when a child immediately repeats “First finish your work, and then you get your cookies”, he may just be validating what you had said. Whilst asking A for any information, instead of phrasing it as a question like “What is your father’s name?” you may want to introduce fill in the blanks like “Your father’s name is...” As A will learn to express self better and also learn to comprehend language, the echolalia will eventually be replaced by flexible, creative language.
Back to questions
Year published in: 2012
Screening and Diagnosis
Q: I’m from Alexandria, Egypt. My son is 23 months old, and his paediatrician suspected that he has some autistic symptoms. I have read up quite a lot about autism online, however I cannot judge if my son is really autistic or not. I’d like to describe a few of the main symptoms that my son has. He tends to flap his hands frequently. He does not point to things, nor does he use gestures like ‘bye bye’ etc. On some instances, I have observed him walking on his toes: a few steps every 2-3 weeks. He has very good Eye Contact even with strangers, but when I sing to him, he looks only at my mouth. There is a delay in speech and at present he only babbles with sounds. He started babbling at 9 months and then stopped at about 18 months. Then, about two months ago, when we completely stopped watching TV, which he used to spend extended hours in front of, he started babbling again. He doesn’t go to a nursery, so I cannot describe what his interactions with peers might be like. However, with his cousins he tends to play for some time and then stops and so on… ...Read More Show Less
Ans: I can well imagine the amount of confusion that must be surrounding you at the moment. In India, we are faced with a very similar situation - limited awareness and services available for children with autism. Very often children are at least 3 years old before a diagnosis of autism is suspected even though we know that autism can be identified as early as 18 months of age. It is truly terrific that you are seeking answers when your child is only 23 months of age. In India as in many parts of the world, at this age, we are able to screen a child for autism and say if s/he is ‘at risk’ for autism. Other words that are used to describe this are ‘symptoms of autism’; ‘mild autism’ or PDD. Regardless of the term used, we strongly recommend that children who is ‘at risk’ of a later diagnosis of autism are put on an early intervention programme as soon as possible using autism specific techniques. A follow-up visit for a diagnostic assessment in 9 -12 months is then recommended. This ensures that we have effectively utilized the child’s early years that has been proven to be so very important to development. Some of the behaviors that you describe in your email closely resemble autism. However, a diagnosis can be given only after meeting with the child. However, in the meantime you could also answer a few questions at home through the attached questionnaire the M-CHAT. This is a screening tool that is well known and used internationally and can be a reliable indicator to check if your son is at risk for autism. You can also read about the M-CHAT on the internet. Here are some organisations that we are aware of in Egypt. Please note that this is just a simple list of places we know of and not a recommendation. There are probably many more organisations that are not on this list. Organisations in Egypt
The Egyptian Autistic Society
7 Naguib Mahfouz St.
New Nirco, Maadi, Cairo
The ADVANCE Society (The Egyptian Society for Developing Skills of Children with Special Needs)
34 Al-Nadi Al-Gadeed St., New Maadi, Cairo 11435
Tel: 2025193721/ 5193723
The ADVANCE Center [run by Learning Resource Center],
34 Al-Nadi Al-Gadeed St.,
New Maadi, Opp.
the New Maadi Telephones Central Office, Cairo 11434
Tel: 202519-3721, 202519-3723
Year published in: 2012
Q: My daughter, H, is twelve years old. I am having a lot of difficulties with her toilet training. She doesn’t indicate at all when she wants to go to the toilet. Even if I take her to the toilet at regular intervals, for most of the times, she doesn’t do her job there. Sometimes she stands up from the pot and does it standing within seconds just over there. Sometimes she comes out of the toilet and does her job after a few minutes. I have kept a record of her timings for a month and tried to take her as per those timings. But her schedule varies. Sometimes she does it more frequently whereas on other days there are long gaps. Sometimes she cooperates for the whole day. For the past two weeks I am noticing that she starts jumping and laughing before doing her job, but I am not sure if it she is using this to communicate her toileting needs. Please help. ...Read More Show Less
Ans: Thank you for sharing your concern about H. We appreciate your desire to teach H to relieve herself in only the toilet and also to indicate her need to urinate and defecate well in advance, to avoid accidents. As with any other skill, toileting too needs to be taught gradually in steps. Independence in this very complex self-help skill involves control over physical, physiological, cognitive and sensory processing and generalise the same in different situations. When teaching a child to void oneself at the appropriate place i.e. the toilet, it is first important for the child to have the ability to recognize the sensation of needing to relieve oneself, an area of difficulty for a large number of children with autism (almost 98%, according to an American study). Just like one associates that ‘hollow feeling’ in the stomach with hunger, we also recognize that the heavy feeling of discomfort in the lower part of the stomach, indicates the need to urinate or defecate depending on the particular sensation. Our body has the interceptors which help us to recognize this sensation and since these receptors (sensation recognizing connections) are present internally in our body, teaching the child how to recognize these messages may be a bit difficult and may involve actually creating the sensation within the body. For instance, one can give the child plenty of fluids, in an effort to replicate the heaviness in the lower abdomen signalling a full bladder and hence ‘feel’ the need to urinate. From your description, it seems that H does recognize the sensation to relieve herself occasionally and also has the physical skill to perform the job. This means we need to use strategies to teach her to consistently recognize this sensation and also learn to relieve herself in the appropriate place. When doing so, schedule training or taking the child to the toilet at regular pre-determined intervals, is very effective. But taking the child to the washroom too frequently may not be a good idea, because that would come in the way of the building the capacity of bladder muscles to retain urine which in turn leads to better control. Taking her at too short a duration will reduce chances of accidents but will not help her to build the control or to learn
to control the need to void until taken to toilet. Instead finding the optimal time to her to the toilet would be more effective. You are already taking H to the toilet at regular intervals based on the data that you have collected for a month observing the times at which she relieves herself. However, you have also mentioned that to her toilet schedule tends to vary. Have you noticed anything different about those days? For instance, on the days she urinates more frequently, has she drunk more fluids, is it less warm/ cooler than other days? Or on the days that she is urinating at longer gaps, has she been sweating more? These may help you vary the times at which you take H to the toilet, varying her toilet schedule as per her needs. Keeping this in mind, you could start taking H to the toilet and help her sit on the toilet seat every 60 to 90 minutes, so that she learns that she can relieve herself only at a specific place, i.e. in the toilet, when she sitting on the pot. When she is sitting on the pot, you may want to talk to her, praise her for sitting well, so that the sitting on the pot, per se, becomes a positive experience. You can give her something to hold on to or a toy to play with when she is sitting on the pot to help her sit better, unless you feel that this may distract her from doing the job. And when she has relieved herself, remember to praise her BIG and praise her specifically ‘Good doing your job in the pot!’ You can also give H something that she likes a lot - a toy, an edible, music, anything that will help her remain motivated to relieve herself in the toilet. On the occasions that she does not void, instead of coercing her to sit on the toilet seat for a long duration and insist that she urinates, it may more advisable to let her go after she has been sitting for a couple of minutes and then bring her back to the toilet after a short while. This would ensure that the experience of sitting on the pot remains positive. Praising her specifically- ‘Good sitting on the pot’ will also help keep this experience positive. Do remain focussed at this point of time to avoid accidents and take H to the toilet frequently till she relieves herself. And when she does eventually void, as mentioned earlier, do remember to praise her specifically, as well as give
her something that she likes. And once she voids, you can once again revert back to the 60/ 90-minute schedule. In the event that an accident does happen, please do not get disheartened. Instead clean her up without giving the behaviour any attention and staying emotionally neutral. You have mentioned that sometimes H has started laughing and screaming and you are not sure if she is trying to indicate her need to go to toilet through this behaviour. We would suggest that you do not take her to toilet ONLY at the times when she shows this behaviour because by doing this, you will in effect be teaching her that she can indicate/ communicate for her toileting needs by laughing and screaming. Taking her to the toilet consistently and regularly, even when she is not exhibiting challenging behaviours like jumping and laughing will increase the chance of success of relieving herself in the toilet. When you say that ‘sometimes she does it in standing’, have you noticed anything different at these times? Does this happen when she is not going into her usual toilet or when the toilet is wet or she has to go bare feet or if she is doing with a specific person/s like only with you (which could be her way of getting attention)? For sensory challenges, try simple strategies like placing a stool under her feet (if you feel her feet are dangling) and/or letting her support herself against the wall (if you feel additional support would add to comfort) and/or wear slippers while entering the toilet (if a wet floor/ cold feel of the toilet floor may cause discomfort). Also prepare her beforehand if, at home, she has to use a toilet different from the one that she usually uses or when she may have to use a toilet when she is not at home. Should you notice that she is doing this with a specific person/s, it is very important that she gets no attention for the accident, but, instead at all other times when she is doing something appropriately, including relieving herself in the toilet, she gets a LOT of attention. When teaching H to recognise the ‘discomfort’ associated with the need to defecate or register the sensation, you can make her sit on the toilet seat every day at fixed time, preferably after meals when her stomach is full and passing stools is easier. You could do the same when you
notice a sign of discomfort or a gesture suggesting that she needs to defecate. We need to remember that oftentimes children with autism suffer from constipation and infrequent bowel movements. Limited diets due to food preferences, as well as sensory issues may further aggravate the problem. Introducing healthy food with enough fiber in small portions is a good idea. Getting a child used to a new diet will take time, but consistency is the key to success. We need to remember that changing the child’s food habits also means changing the food habits of the entire household, which though difficult, is not impossible! And to also remember that such adaptations for the entire family need not be for a lifetime, but, only till the child has got used to a somewhat balanced diet and has a more regular bowel movement. Giving visuals as reminders, as well as social stories to help the child understand where it is appropriate to relieve oneself is always advisable. Also do ensure that H has free access to the toilet whenever possible and that in new places you always show her where the toilet is. Further, help H perform the task in a ‘socially appropriate manner’, with teaching her to close the door of the toilet when she is using it and undressing or dressing ONLY inside the toilet. Slowly start working on generalization by encouraging H to use the bathroom in different settings like the school, relatives’ house, malls etc. And, most importantly, as when teaching any skill, do remember to reinforce every small effort that H makes. Once H has achieved a degree of success in relieving herself in the toilet and there are far fewer accidents, it would be important for you to start teaching her to indicate her need to go to the toilet using the mode that she uses to request/ communicate for her other needs. You can teach her to use a sign or exchange an object/ photograph/ picture card or say the word (if she has vocals) consistently before you take her to the toilet. We hope that you will find some of these strategies useful. Please remember not to turn this into ‘battle of wills’ and that H does not use the toilet training task as a way to control you and the other caregivers. We wish you the best in your journey ahead.
This helpline question has been answered in conjunction with Dr Anjali Joshi. Dr Anjali Joshi is a practising occupational therapist, trained in S. I. and you can contact her email@example.com
- Building bridges through sensory integration by Ellen Yack, Shirley Sutton, Paula Aquilla.
- A Work in Progress: Behaviour Management Strategies & A Curriculum for Intensive Behavioral Treatment of Autism by Ron Leaf, John McEachin, Jaisom D. Harsh.
- Potty training for children with autism or intellectual disabilities. Developmental Information and Practical Procedures by Sue Bettison.
Year published in: 2016
Q: My son is 5 years old and has autism. I am going to be staying in Delhi for a period of 3 months to attend a training programme on autism. The flat that we will be staying in has only a western-style commode (WSC) in the bathroom. At home we have both a WSC as well as an Indian style toilet, and my son is used to the Indian style toilet. He does not stand and urinate, but squats whilst doing so. How should I prepare him for this transition to a WSC? ...Read More Show Less
Ans: Changes as we know are often a challenge for persons with autism. We will try to give a few general suggestions which may help make your son’s transition easier. As with any change, it is necessary to prepare your child for this change in advance So you may want to prepare your child in detail about the shift to Delhi. This would include preparing him about the new flat that he will be staying in as well as the new ‘school’ that he would be attending. Make this explanation as visual as possible.
For this you can use a calendar, pictures, photographs, and anything else that will aid your child’s comprehension of the situation. Mark the day on which you will be travelling to Delhi on his calendar. If you can access photographs of the flat that you will be staying in along with pictures of his new school, that would be ideal. Alongside you could also tell him that this flat would have a WSC in the bathroom and that you all would be using a WSC in the new flat in Delhi. Once you have started preparing him for this part of the ‘change’, you could decide upon a date from when you could try to help your son use the WSC at home. Once again the use of a calendar and photographs will help. You could also use a social story (with illustrations, if you feel that would help). In addition you could use ‘video modelling’, wherein you could shoot a short clip of someone sitting on the WSC and play the video for him a few times a day, whilst prepping him for using the WSC. Initially you want to focus on getting your son comfortable about using a WSC and not so much on whether he sits or stands whilst urinating. For the time being just concentrate on your son getting used to the WSC. This may help him acclimatise himself to using a WSC faster, instead of having to learn too many things and adapt to more changes at the same time. In addition, you may also want to keep in mind any sensory issues that your son may have. One of the things that is difficult for young children with autism when sitting on the WSC is that their feet don’t reach the ground and tend to dangle in space. This can also make it difficult to move the bowel. Hence you may want to place a stool for him to rest his feet on and have a better sense of stability. Have a stool high enough so that his knee is on level or higher than his hips. Given his age you want to also use a ‘baby seat’, a small commode seat that can be placed on the actual WSC seat that grown ups use. Do remember to keep your son’s experience whilst using the WSC a ‘happy’ one. You could sing to him, blow bubbles etc whilst he sits on the WSC to reinforce his sitting. Further, once he does his job, do remember to praise him big and maybe reinforce him with some favoured toy/edible item/ activity.
Year published in: 2013
Q: My daughter’s special school is part of a larger, regular school. Recently, after I had dropped her off at school, she was molested by a peon of the regular school. The campus watchman intervened and told me about the incident later. When I brought this to the notice of my daughter’s school authorities, I was told that they do not have any say over the functioning and staff of the regular school. I am feeling helpless and concerned about my child’s safety. What do I do? Please help. ...Read More Show Less
Ans: Sexual abuse is always a concern for most parents whether their children have special needs or not. It is one of those areas that parents feel helpless about, both in terms of prevention and intervention in the unfortunate circumstance of it occurring. As parents, it is this feeling of helplessness that one would probably need to deal with. My plea to you is that whatever else you do; please do not accept this situation, not just for the sake of your daughter’s safety, but for all the other students who could be prey to a similar situation if not corrected. Your daughter’s school cannot under any circumstance claim that they do not have a say over the matter. Irrespective of whether they have a say in the management or functioning of the mainstream school that your daughter’s special needs school is part of under these circumstances they have every right to intervene! As a school they have a responsibility towards their student’s safety and well being, physical, emotional, sexual, the entire gamut. To absolve themselves of this responsibility would at one level be tantamount to their aiding and abetting this incident. Learning skills and being helped to reach one’s maximum potential is an important aspect of schooling, but the student’s safety is paramount and is the very basis on which any parent would send their child to a school and trust them with their children’s vulnerabilities. On your end you could offer to directly approach the principal of the regular school. She/He may actually be receptive to your situation and prove to be a sensitive and concerned individual and take corrective measures. It may also be worthwhile to point out that if the peon gets away with molesting your daughter, he may not stop there. Not only may he repeat the act with your daughter, the safety of all the students will be jeopardy. In addition to the preceding, from now onwards, whenever you drop your daughter off at school you could try to make sure that you entrust her with a teacher. Your child’s safety and wellbeing is primary and as a parent you have the right and the power to insist on the same. Further, teach your daughter to protect herself against sexual abuse using some of the strategies that are given in the next question.
Year published in: 2010
Q: Some months back, my friend whose daughter attends a special school told her mother that a boy who is her classmate was feeling her private parts in the school toilet. When my friend brought this up with the school authorities, she was told that this was not the first complaint about the boy and they were trying without success to alter his behaviour. My friend was advised to teach her daughter to be guarded against such exploits, which she has been attempting to do. What could the school and she do in this case? ...Read More Show Less
Ans: Thank you for sharing your friend’s concerns. While teaching the young girl to guard against abuse, there are other steps that are as important. For instance, it is extremely important to change the boy’s behaviour. Not only is this behaviour damaging for the young girl in question, but it can be a potentially dangerous situation for the boy himself. Following are some of the strategies that could be implemented:
- Have the school separate the boys’ and the girls’ toilets, and use clear visuals to indicate the same.
- Analyse the situation and try to arrive at an understanding of the boy’s behaviour. Teach the boy that one can touch only one’s own private parts and never other people’s. At the same time one may also want to help the boy understand, that only he and maybe one or two primary caregivers (mother/father) can touch his private parts under specific circumstances such as bath time. A social story to address this may also be useful.
- Make changes in the environment to ensure that there is no opportunity for the behaviour to recur. One of the things that can be done is to make sure that the boy’s toilet time is always very well structured. He could be taught to follow a work system which would help him walk through the precise steps involved during his toilet time. For example: Go to toilet; Use urinal; Wash hands; Go to class; Next activity. The work system would need to be based on the boy’s functioning level. Initially the boy will have to be helped to follow the work system till it turns into a positive routine. In addition, it has to be ensured that the boy has no unsupervised contact with your friend’s daughter. This would be very important in breaking the inappropriate routine that he has developed with her.
- Teach the boy to interact appropriately with girls; play turn taking games, watch videos or listen to music together, have little scripted conversations. Praise and reinforce the boy highly for appropriate interaction. The contact time could be short to begin with and then extended slowly to ensure success. Other social skills like keeping an appropriate distance whilst interacting with people, acceptable forms of physical contact with different people etc can also be taught to the boy.
- Finally teach the boy to take care of his own sexual needs appropriately. It is wonderful that your friend’s daughter had the communication skills to be able to tell her mother what was going on. It is extremely important for us to always keep our focus on teaching communication, in all its functions. In addition to teaching our children to understand language in all its facets, helping them express their needs, another area of focus needs to be teaching them to ‘report’, as was the case in this instance. This can be done in various ways.
For instance, one can begin with reporting at home. Say, when the father comes back from work he could ask the child what s/he has eaten for lunch, and the mother can facilitate the answer. A diary going back and forth between home and school with salient features of activities in each environment is also useful here, where the teacher can ask the child as to what had happened at home whilst being equipped to prompt the child should the need arise and vice versa at home. In this manner we can slowly build up on the individual’s repertoire of reporting skills. Needless to say, that it is thereby extremely important for our children to have a formal mode of communication that they can use, whether it is vocals or any form of augmentative and alternative mode of communication. Our children are particularly vulnerable to abuse. Hence they need to be taught about safeguarding themselves, about relationships, about how they are supposed to behave with different people who play different roles in their lives, what kind of behaviour to tolerate from others, what kind of physical proximity in different situations, who can be approached under different circumstances. This is an important for appropriate social behaviour as well as for their safety. Some of the specifics of this are detailed in the following:
- We need to teach our children to maintain appropriate physical distance from others. Amongst other strategies we can teach concept of maintaining a one-arm distance by actually positioning the child at a one arm distance from others whilst interacting. We can also teach the concept of relationship boundaries by adapting from the ideas in the Circles Program (Leslie Walker-Hirsch and Marilyn P. Champagne) to explain what kind of behaviour/ physical proximity is appropriate with whom. In this a dot is drawn in the middle of a big piece of paper, concentric circles surrounding it. Pictures and/ or names of different people are added to each of these circles depending on the individual’s relationship with the different people. You can hang this up in your child’s room and add the people (by name or picture) he knows to the different circles, depending on your child’s intimacy/relationship with the different people. Using this we can explain to the child (at his individual functioning level) what kind of behavior in terms of physical proximity, conversation or other relevant issues is acceptable with people in a particular circle. As and when he meets new people, they can be added to the diagram. The different circles starting from the centre represent:
- The private circle/ close hug circle: The circle closest to the dot represents people the child is extremely close to, such as immediate family members.
- The hug circle: This would include the extended family and best friends.
- The far away hug circle: People who are friends but not as close as one’s family or best friends.
- The handshake circle: These would be people your child sees at school or people s/he works with (in case of an adult with autism).
- The wave circle: Here one would include people your child passes every day on the street in the neighborhood, but doesn’t personally know.
- The stranger circle: These are people one would ignore or not give a greeting to, because one doesn’t know them.
- It would be a good idea for our youngsters to avoid inappropriate hugging and kissing as they enter their teens. A light squeeze on the shoulder can be a hug now, instead of a full bodied hug.
- It is important for our children to learn how to respond to inappropriate physical contact. As with much else, we can simulate a situation, take the child through the steps, and practice till the skill is in place. For this, there can be a facilitator behind the child who prompts the required responses, and an ‘aggressor’. The ‘aggressor’ can make a move to touch the individual at an inappropriate place, and immediately the facilitator can prompt the child to push the ‘aggressor’s’ hand away with force and say a loud ‘No’, which our child can be taught to repeat if s/he is vocal. Slowly the facilitator can fade away the prompts until the child is able to do this independently.
Back to questions
Year published in: 2010
Q: A male therapist who has done a short six-month ‘training programme’, from an un-recognized institute has been talking to parents about the need of their adolescent ASD boys to have an older ‘Buddy’ with whom they can be close and share their fears and anxieties. The therapist offers to be this ‘Buddy’ on the condition that the parents allow him to interact with their child alone in a room behind closed doors, claiming that this is his method and that it is known to work in getting children who have behavioural and anger issues due to adolescence to become subdued. When this was brought to my attention, as a psychologist I am rather concerned. How do we stop such practices that can lead to abuse? What yardsticks can parents avail of when responding to such claims so as to ensure that their children are in safe hands? ...Read More Show Less
Ans: It is correct that youngsters with autism benefit from having a non-autistic individual as a ‘Buddy’. ‘Buddies’ for autism are an increasing part of school programs, as well as individuals in their home environment. A ‘Buddy’ is a friend, a chum, who one can spend time with doing something both enjoy. It could be a companion with whom one can spend time having a chat, going for a walk, eating out, surfing the net, listening to music, or simply just ‘hanging out’. And yes a ‘Buddy’ is also someone who one can share anxieties and fears with. It is also true that there are therapists / schools/ intervention centres that have a policy whereby parents or other caregivers are not allowed to observe sessions, where work is done with the child in seclusion. The reason for this is not clear, given that most intervention strategies agree that an individual with autism learns and progresses the best when the strategies used in all environments are the same and consistently so. All those involved in delivering services for an individual with autism - school, special educators, occupational therapists, speech therapists, ‘buddies’, any other, and sometimes parents - have to work as a team, follow similar approaches and be on the same page. One of the best ways for a parent to learn how to teach their child any skill is to be able to observe the experienced professional and replicate the teaching methods at other times, and especially in the natural environment. Of course, there may be some individuals with autism who may not work very well in the presence of others. In this case the decision to work with the child in a secluded environment would be post facto, after having interacted with the child and not pre determined. However, here the young man is offering to act as a ‘Buddy’. It is not clear why it should only be in a closed room with the door locked. The ‘Buddy’ can sit in the family living room and watch TV, have a snack at the table, sit out in the balcony and talk about the world going by, or go outdoors to kick a ball around. Adolescents with autism benefit from a ‘Buddy’ who can help them expend their energy in outdoor activities. We do not want to doubt the intentions of the young man who perhaps truly believes that
interacting with the youngsters behind closed doors is the only way to help. However, in terms of ethics of special education this is not an appropriate procedure. Perhaps the young man is not aware of it and would be open to being educated about it. If it is privacy that he seeks, a room with curtains drawn would work equally well. You have asked how we can stop such practices that can lead to abuse and what are the yardsticks that parents can avail of when responding to such claims so as to ensure that their children are in safe hands. I would think that the only way out is for us to step back and ask ourselves ‘Why?’ Why does a therapist want to work behind closed doors? Is there any justification for the same? If we were in our child’s place, were vulnerable and did not have the communication skills to report about what happened behind those doors, would we want to be in that situation? I know that as parents, we are often desperate for services. But I do not think that we are in a position of ‘Beggars can’t be choosers’. We need to decide for ourselves what it is that we want for our children. We need to decide whether we would want to barter our children’s safety for claims (often hearsay) of miraculous improvement. Once parents have an answer to these questions, it would probably be easier for them to be able to decide what they feel is the best course of action for their children. As the psychologist counselling families you want to make it clear to them that the demand of the young man is unacceptable. I would imagine that you have had some concerns regarding this which is why you have chosen to write to us. Please help parents be aware that boys are as susceptible to abuse as girls. Please make it clear to families that while it would be great for their sons’ to have ‘buddies’, they have to guard against potentially abusive situations. Young people with autism need, in fact crave ‘buddies’. Unlike the former assumptions of people with autism not wanting social contact, we now know that most people with autism do want to have friends, it just that they do not know how to go about it. So it would be wonderful if we could find a safe way to find ‘buddies’ for our youngsters. In fact Action For Autism is trying to tie up with Best Buddies International
(www.bestbuddies.org) to bring a programme that would facilitate this in India.
Year published in: 2010
Q: My son has difficulties when we go for outings or to public places. How can I help him?
Ans: Since you do not mention the exact nature of the difficulties that your son faces, we provide below a few general strategies that might be of use.
We do know that a lot of children with autism have sensory issues. When we go out, we may want to keep these in mind and give our children some coping mechanisms to deal with the same. For the child who may find sounds of the traffic aversive, we could try to give him cotton wool to put in his ears, or a mobile phone or ipod to listen to music. If there is a child who likes to touch surfaces when he goes out, we could give have him hold little toys, bags, or other items made of the textures that he likes to feel.
If it is child for whom the visual stimulation is too overwhelming, a cap with a visor may help. These strategies may definitely help the child feel more collected and better able to cope. Often times our children may have inappropriate behaviours in public places because of their difficulties in understanding or knowing what they can expect from a social situation. They may not be able to ask questions about the situations to ease their confusion. Even for those who may be more vocal, the anxiety and the confusion may ‘short circuit’ their communication. Using supports, including visual supports to give predictability as to what is going to happen, what the child can expect from any social situation can help a lot.
A visual support can be like a ‘to do list’ that you can carry with you, listing out the sequence of events that will take place in any given situation. So, if you are going to buy groceries at the local grocer, you could carry the following ‘to-do- list’: walk to the grocer, buy items, pay the grocer, walk back home. The ‘to do list’ would need to be at the child’s level of understanding, and can be pictorial or textual or a combination of both.
As each step of the sequence of activities is finished, there could be a system to denote ‘finish’: such as crossing it off with a pen. Another support that can be used is a social story. A social story is usually a first-person, present-tense story used to provide as much information about a social situation as possible, to the person with autism, so that he is better prepared to face and act appropriately in, that situation.
A lot of people with autism have difficulties in waiting, especially at a public place- waiting for a bus to arrive, waiting at a doctor’s clinic etc. In a situation like this it may be a good idea to carry a favoured toy that can keep the child occupied for a while. The visual support of a ‘Wait’ card may also be of help. This is a card with ‘Wait’ written on it. When the child has to wait for something, one could hand the card to him which he can hold as a visual reminder.
As is the case whilst teaching any new strategy, the ideal way to teach the use of a ‘Wait’ card would be in a contrived situation, starting with very short spans of waiting time. So, say, you are taking the child out to the park, both of you are absolutely ready and approaching the main door of your house to leave for the park, before opening the door, you hand him the ‘wait’ card, and say “Hey, we need to WAIT”.
Count to three in your mind, ensuring that the wait time very brief, then say “Ok, waiting time finished! Let’s go!” Take the card back. Then proceed to the park. You could do this with different situations, increasing the waiting time gradually. You do want to praise your child for waiting well. You may also reward him with something that he likes. Once your child is comfortable waiting in these contrived situations for a slightly longer period of time (around 15 minutes), you may want to giving the child the wait card in a ‘real’ situation.
And, last but not the least, it is absolutely essential for us to reinforce the child’s efforts and keep interacting with him so that he does not feel the need to indulge in any inappropriate attention seeking behaviours. You can sing, comment on what you see on the street, have fun with him and in general just keep him included in the situation. We hope that outings in the future will be more pleasurable for you and your child.
Year published in: 2015
Q: Being parents of an autistic child, we know about the problems that the child is facing and the associated behavioural problems. But how do we explain this to others?
Should we rationalise and explain our child’s inappropriate behaviour to others? We often face such difficulties in public places or public transport. How do we deal with it?
Ans: As parents of children with autism, we are frequently asked questions about our children and their behaviours by strangers and even people we may know well. And sometimes we may tend to feel hurt or defensive when faced with these queries.
It is a bit unclear what you mean by ‘rationalise’. I am guessing that perhaps the reference is to justifying our children’s behaviour? If yes, then there is really no need to do so. If someone does not directly ask us about the child it may be best to just let it go and not try initiate any explanations or justifications. However, if someone does ask us about our children, we could always explain the situation to them from a place of comfort, using positive and simple language.
One of the things to keep in mind in these situations is that when people do ask any questions about our children, most do it out of curiosity and not any deliberate malice...something that we may also do given different circumstances. For example, if we were walking down a street in Old Delhi and we saw some American Indians wearing their traditional clothes and speaking in their language, a lot of us would pause to look at them. Some of us may even query about them, maybe ask the local tourist guide who is accompanying them. Or if we saw someone gesticulating vigorously on a street, for no apparent reason, we may go up to ask them what the matter was. None of these queries would have any ill intent behind them; they would be driven by our interest at seeing something ‘different’, something that one is not accustomed to seeing.
Similarly, for most of the people who ask questions about our children, autism and the behaviours associated with it, is an unknown thing, something that they have never been exposed to and hence are curious about. So when someone does ask us a question about our child or his/ her behaviours, one way of perceiving the situation is that it is a wonderful opportunity to acquaint them with autism. That way we get to raise awareness of autism which will then no longer be an ‘unknown’ thing for them. And we know how necessary awareness is for creating general acceptance in society, government legislations and policies for people with autism; all leading to a better future for our children. How we view our children’s behaviour and how we react to them determines how our child, and in the larger picture, autism, is perceived by others. The ‘place of comfort’ and ‘positive’ language is key here. In your query you have mentioned that as parents of children with autism, we are aware of the problems that the child is facing and the associated behavioural problems.
The thing to consider is that if we view our children’s behaviours as ‘problems’, we cannot expect others to view them any other way. It is something like, say, you have never tasted an avocado and someone tells you that it tastes foul; you’d probably go with that impression, until maybe you actually tasted it. That is how most of our beliefs are born.
When we are faced with an unknown situation, what we are told about it influences what we believe about it. So, when we think that our children have ‘problems’, the way we explain a situation would be coloured by that. Even if we don’t use the word ‘problem’, or any similar term, our attitude, our body language is bound to reflect our thoughts. There may be some discomfort, a degree of defensiveness in our conversation, all reflecting that there is something ‘wrong’ with our child. We know that our children have behaviours for very valid reasons. And, this may be what we want to convey to people.
So say when someone asks, “Why does he do that?” we could respond with a smile and a simple “He has autism!” Depending on the situation you could also add “He communicates a bit differently and being in social situations is hard for him. So his behaviours may seem a bit different”.
You could also include your child in the conversation. Turn to your child and say: “Rohan, this lady does not know about autism, and so I am just explaining autism to her”. Keep some simple flyers on autism handy and promptly hand one the the questioner!
Couple of things you want to keep in mind. It is important that the words you use do not convey a negative image of your son in any way. Secondly, you may want to avoid reprimanding your child for behaving ‘inappropriately’ because then you convey to the other person, that your child’s behaviour is ‘bad’ and, something that needs a reprimand. This is not to suggest that we let our children do whatever they wish in public. It is equally important for us to help our children be comfortable in social situations and equip them with the needed skills. This will enable them to experience different social settings, learn from them, enjoy being in them and be ‘included’ in the truest sense of the term, as part of society.
Year published in: 2014
Q: My child usually sleeps well in the night. However for the past three to four days he has not slept at all. We are really worried and wondering how we can help him?
Ans: Thank you for writing in. Sleep disorders are common in children, including those who are typically developing as well as children with autism. However, children with autism are more likely than typically developing children to have sleep disturbances.
- These disturbances in sleep can take many forms, including bedtime resistance, delayed sleep onset, frequent night time awakenings, disordered breathing during sleep, difficulty in waking up in the morning and daytime sleepiness.
- Sleep disturbances are challenging because they in turn impact day time behaviors in children, and are associated with significant stress in parents and other family members.
However, parents are most perturbed when children who seem to be sleeping well through the night suddenly develop disturbed sleep patterns. Like all other challenging behaviors in autism, it is always preferable to start at the ‘why’. The causes of sleep problems may vary from child to child, and are influenced by factors such as the child’s age, general health and home environment.
When families with children with autism face acute sleep disturbances, one of the first things to note is the general state of the child. Does the child look distressed? Is his mood more irritable than usual? Does he look lethargic and cranky? Consider commonly occurring conditions like infections and illnesses. Ear infections and associated ear ache is one of the most common causes for sudden onset sleep difficulty. Children find it more painful when they are made to sleep on their backs, especially when there is an accumulation of fluid behind the ear drum and may resist going to bed. In such cases, you may also notice that the child is tugging or touching his ear repeatedly and may have a cold at the same time. Tugging around the ear is not limited to ear aches alone. Tooth ache may also get referred to the area around the ear and is another cause for sudden onset of sleep difficulties. Both ear and tooth ache can increase due to chewing and swallowing, and thus going to sleep after meal times may be especially difficult. Sometimes, the pro-dromal period of many childhood infections (the period before the infection becomes obvious) may be associated with headache and a general sense of unease that may reflect as poor sleep quality.
- Other medical conditions that can be associated with sleep disturbances in a small percentage of children include epilepsy. However, research is not clear about the reason for sleep disturbance in epilepsy and it could be due to either epileptic activity during sleep, medications for epilepsy, mood or a combination of these and other factors.
Consider what else is different in the child’s environment. Look for reasons that may lead to increased arousal and /or anxiety in the child’s environment. Some of the commonly-known causes include introduction of new medications. Medications like methyl-phenidate3 especially if not timed right, may impact sleep. Sleep disturbances may rarely be associated with certain anti-epilepsy medications. Please ensure that you discuss these changes with your prescribing doctor and do not stop or change medications on your own.
Consider if there have been any recent changes in his activity level, either at home or outside. Vacations often trigger changes in sleep patterns because of changes in structure and routines. Occasionally, changes in the kind and timing of sensory based activities as part of therapy or home programs may trigger sleep disturbances. Television viewing habits, especially increased daily viewing time and bed-time viewing have been found to be associated with bedtime resistance, sleep onset delay, and anxiety around sleep, followed by shortened sleep duration.
- While major changes like moving homes or changing bedrooms could be connected to your child’s sleep disturbances, look for other seemingly minor transitions in the child’s environment. It could be disturbances in the immediate environment (e.g. sudden drop in temperature, the noise of an air conditioner, transitioning from a small bed to a larger one or changing bedrooms, moving homes, etc) to differences in routine ( different person putting him to bed or changes in night time routine).
In summary, it is essential to consider possible reasons for a sudden change in a child’s sleep behaviors. If sleep difficulties persist, please keep a ‘sleep diary’ (information related to sleep timings, patterns and routines) for at least a week to look for hours and patterns of sleep. The specific intervention will then depend on the nature of the sleep problem and the child’s specific needs. Please seek a physician’s opinion if you suspect medical causes or changes in medications. Also, bring up your concerns to the professionals who are involved in your child’s care(occupational therapists, behaviour therapists etc). Together, you might find it easier to look for changes that may have triggered the sleep disturbances and make appropriate corrections.
Some common Do’s and Don’t’s :
- Make the last 30 minutes before bedtime a regular routine and use advanced warnings.
- Include activities such as dressing for sleep, washing, and reading
- Include soothing, relaxing, and quieting activities (things enjoyed by both the parent and child)
- Try to keep the order and timing of these activities the same each night (throughout the week and weekend)
- Avoid activities that tend to cause overstimulation (T.V., rough-housing) in the period immediately preceding sleep
- Restrict activities in the child’s bed to those that help induce sleep
- Reduce noise & light in the bedroom – create a soothing – low stimulation environment
- Try rocking/cuddling/singing/ rubbing/massage/deep pressure/brushing
- Use a comfort toy
- Avoid extreme temperatures and temperature changes in the bedroom.
- The importance of bed time routines and how to establish and maintain one has been explained in detail in the April 2014 issue of the Autism Network (http://www.autism-india.org/sites/default/files/apr14.compressed.pdf ) in pages 14-15.
All the best!
Back to questions
Year published in: 2015
Q: Hi. My son, M, is 16 years old. He has always had extremely irregular sleep patterns. However, for the past couple of years he virtually does not sleep at all in the nights. On some days he sleeps for just half an hour in the day and that’s all. He seems to be fine. But, we are completely tired. We get no sleep in the nights, since M keeps us up. We keep telling him to go to sleep, but, instead of listening to us, he asks us to do different things for him like give him a snack or to put the TV on and so on and if nothing else to just stay awake with him. Even after we do all of this, he does not sleep. Is there anything we can do to change this? ...Read More Show Less
Ans: Thank you for writing in. One completely appreciates how fatiguing this situation may be for you and your family. There seem to be two issues here: one, M not sleeping at night; two, other members of the family being deprived of sleep due to M’s keeping them up.
To address the first: there are some individuals with autism who may have sleep disorders and there are also those who just seem to need less hours of sleep than the non autistic population. From your email, it seems that M may fall into the latter category, since you mention that he seems to function fine even with just half an hour of sleep in a day. However, it may be worthwhile to seek some medical advice on this. For instance, it seems that some individuals with autism may have a lack of melatonin (melatonin regulates sleep-wake cycle) and this could disrupt brain systems and cause sleep disorders. In such cases giving melatonin to the individual may definitely help in regulating sleep patterns.
In addition there are strategies that one could try out, to help M sleep better and / or be more settled in the night which we discuss in the following. Firstly, try to introduce a ‘bedtime routine’, in case M does not already have a regular bedtime routine. For instance, if we decide that M needs to be in bed by 10.00 pm, we could start setting up this ritual from as early as 8.00 pm. The routine could start with a hot water bath (hot water baths often help calm the senses) and then he could change into his ‘bed clothes’. If M does not have specific bed clothes, you could set aside one or two sets of comfortable clothing that M wears only for going to bed and at no other time, so that M associates those garments with ‘going to bed’. M could then have his dinner. Since you have mentioned that M tends to ask for snacks in the night, you could give M a slightly heavy dinner, to make sure that he is not hungry in the middle of the night. After this, you could put on some soft music, perhaps instrumental music,without too much percussion.
One of the things to avoid at this time would be watching TV or sitting at a computer. Studies show that both these activities that involve looking at a lit screen suppress melatonin and delays the onset of sleep. This could also be time for some quiet interaction when you can chat with M about the day’s activities. The conversation has to be a relaxed, casual discussion, and not about testing his knowledge. Any kind of rough housing or animated play too, is best avoided at this time. Closer to bed time have M cross off the day on a calendar. If the date is 10 November, you could help M put a cross on the ‘10’ in the calendar, to clearly signify that the day is over. If M uses a visual schedule then place a ‘Bedtime’ / ‘Sleep’ card on the schedule that he can take and match to his sleeping area. This would be the last activity on the schedule, so after taking the bedtime/ sleep card the schedule gets finished. This would again help M understand that all activities for the day are over. Once M has checked his schedule and headed to, or been guided to his bed you could introduce a closing ritual. Depending on his functional level, he could read a story or you could read one out to him / sing some songs and/ or say a prayer with him. Whatever it is, it would be a good idea to keep your voice very soft.
Once this is over, say ‘good night’ to M, tell him that it is time to sleep and then just let him be. Should he get up again, you could guide him back to bed, gently telling him ‘It’s time to sleep’. The preceding is just an example of a bed time routine. You may want to tweak it to M’s interests and functional level, and what makes sense to M and the family. Once a sleep routine has been introduced, follow the same pattern of activities daily with no or minimal variation so that for M there is predictability in the activities that lead up to his bed time. It is possible that despite the bedtime routine M continues to be up and is unable to sleep. Then the next thing to do would be to help structure the night time for him.
If there are any activities, for instance looking at magazines, listening to music or doing puzzles, that M enjoys, you could add these to his schedule for the night. Of course, in that case ‘Bed time’ / ‘Sleep’ will not be the last activity on the schedule. A ‘to do list’ or a mini schedule could have pictures of the activities in the sequence in which they are to be done (eg first, listen to music; then, look at magazines and last, doing the puzzles). Should you feel that M does indeed get hungry in the night, you could also set aside a small snack for him to eat. Further, do make sure that your house is completely safe for M, ie the main door and balcony doors are locked, there is nothing fragile/breakable around etc.
Also if there is something that you would rather that M did not have access to, for instance, the kitchen or the TV, you could block the access to the same, maybe by locking the kitchen or disconnecting the TV from the main switch or keeping the remotes away.
This will ensure that M is safe as well asdoes not have possibility of doing things during the night that you would rather he did not. Another strategy that may help would be to write a social story about bedtime. The social story can be a very effective tool to provide M with information of what is expected of him. You could use pictures/ photographs relevant to the situation to illustrate the story. The story would describe the activities that lead up to bedtime and what happens at night. It could provide information about the options of activities that he has in the night, should he be unable to sleep, even as his parents sleep. You could read this story out to M two to three times in the course of the day, and also as one of the stories that you read to him at bed time. Along with all of the above, do also try to ensure that M gets ample physical exercise and that he does not nap during the day. An extremely vital learning for M would be to understand that while it is okay to want to stay awake at night, bed time is not a time to interact with others. For all of us there are those nights when we are be unable to sleep. On such occasions we keep ourselves occupied by reading, watching the TV, listening to music or any other activity that may help us pass the night, and we also know that we cannot wake up the rest of the family.
This is what we will have to help M to learn. From your mail we understand that when M asks you to stay awake with him, or to put on the TV or give him a snack, or when he is just moving around, you invariably interact with him. M has learnt that if he stays awake at night he gets your attention, if he demands a snack you will get up and give it to him, and so on. He has learnt that when he is unable to sleep it is okay for him to wake you up, get attention from you, and get his demands met by you. This is something that we need to help M unlearn. So from now onwards, once you have wound up for the day and gone to bed, you will need to stop responding to M completely till it is morning. That would include not telling him to go to back to sleep or not getting up to give him something he wants. Instead, continue to keep lying in your bed. This would also entail not looking at him when he makes his demands, or looking annoyed, exasperated, anxious or any of these. Pretend to sleep and if need be, cover yourself tightly with a sheet. Initially, both you and M may find this very challenging, but, it is essential for you to be able to do this, for M to learn that even though he is unable to sleep, it is okay for you to continue sleeping. Initially you may face resistance from M; he might try to shake you to ‘wake’ you up, or pull the cover off. Depending on how he reacts to unexpected situations, he might also vocalise or make other sounds or movements. The important thing would be for you to stay consistently non-responsive to his efforts to get you up.
Finally, any night when M has been more settled it will be important to reinforce him the following morning, with a lot of attention / affection / activities or items that he likes; in short anything that hold a big appeal. The whole process may take some time: for M to settle into his bed time routine; for him to stop trying to make you get up and meet his demands; learn to keep himself occupied if he is unable to sleep and thereby you being able to sleep; and hopefully for M to start sleeping better and longer. However, if you are consistent in the strategies that you follow, and give M time to understand what is expected from him, some of these issues that you are facing will certainly get sorted out. All the best!
Year published in: 2014
Q: My grand-daughter is a non-verbal autisti c child of five and a half years. It has been noted that there are variations in her problem behaviours periodically. For instance, she may be having a certain behaviour currently, but after awhile, say three months or more she forgets that behaviour and adopts a new behaviour. And again after some months she starts exhibiting the first behaviour, forgetting the second one and this continues on. Recently, there is a change in her behaviour. Earlier she did not have any major reaction seeing her mother after long intervals (hours). Her mother is a teacher. But now my granddaughter does not leave her mother for a single moment after she comes back from work. It becomes difficult for her mother to even go to the toilet. She jumps, cries, runs frantically till her mother comes by her side. However, when her mother is in the school for some hours she seems to be alright. ...Read More Show Less
Ans: Thank you for your mail and for sharing your concerns about your granddaughter with us. Reverting to an earlier behaviour after it seems to have gone for a while is not an unusual phenomenon. One reason for that could be that when a child has a behaviour that we do not want, we use strategies to get rid of it. And the behaviour goes away. For instance, a child might cry and lie down on the ground till she gets a chocolate when her father comes home. Now the father may have made it clear that there would be chocolates only on weekends.
He remains firm and consistent with this rule and as a result the child has now learnt this rule and the crying etc is gone. But supposing her uncle comes to visit after a month. It triggers her memory of her father and the chocolate every evening. So she cries for a chocolate and lies down on the ground and her uncle ‘feels bad’ and gives her the chocolate she wants. Bam! The behaviour of crying and lying on the ground will now be back again. I am not suggesting this is the reason every time, but it often is.
You have also mentioned that of late your granddaughter seems to be settled when her mother is out of the house but is very clingy when her mother is around. It is entirely possible that now she is more aware of her surroundings and is missing her mother and is looking forward to her time with her. Our children’s feelings and expression of the same do change with time as their awareness levels. However, it is difficult to say with surety that this is the reason for her initial distress. There is another possibility. Perhaps on the first day that she acted clingy and crying she may have been anxious or stressed for some other reason but it was assumed that it was because she was missing her mother. As a result she may have got a lot of attention and cuddling and as a result now she repeats the behaviour in expectation of the cuddling and attention she got the first time from her mother.
If the behaviour is because she is missing her mother, then it would help to acknowledge the fact. When her mother is away, speak to her about it in simple clear language. Tell her that her mother has gone for work, that you understand that she is missing her mother, that it is okay to miss her. Reassure her that her mother will be returning, and when. “And we will have fun when Ma gets back.” Introduce some visual information on when her mother will be back. For instance, a clock-face where the hour when her mother returns is marked. Say, her mother returns at 3 o’clock. Place a small picture of her mother, or a simple ‘bindi’, on the ‘3’. Show her the hour hand and tell her that her mother will be back when the hour hand is on the picture of her mother (or the bindi). You could also introduce a calendar which would have the days on which her mother goes to work and those on which she is at home clearly marked on it. This would help reduce her anxiety by giving her some predictability.
Before leaving for work, or the night before, her mother could prepare your granddaughter. She could tell her, “Tomorrow, when I get back, we will first play with our blocks. And then I will go for my bath.” On her return she could say, “Come on! Time to play with the blocks. After that Ma will go for her bath. Then we will have dinner. And then we can play again.” Using visuals (such as a schedule) to explain this will of course be more effective.
While her mother spends time with your granddaughter, it is also important that she takes time off for herself to unwind and do her chores. So when after playing with the blocks it is time for her mother to go for her bath, she will do so irrespective of any crying or clinging that your granddaughter does. Our children have to learn that there are times when things may not go the way we want and that they can be comfortable about that. Teaching our children to be comfortable, despite being in a situation which they may not like, is one of the most important lessons that we can teach them, because they will not always get what they want in life. No one really does! And it is up to us to help them learn this for a healthier and happier future. At the same time, I would encourage you to help your granddaughter learn an alternative mode of communication, like communicating through the use of signs or pictures.
Year published in: 2010
Q: I have a 10-year-old autistic boy, L. I do apologise for not having more input and communication with you and the ‘autism’ world. I guess (like most parents of autistic kids) I haven’t got a lot of spare time. But I would really appreciate your help with some of my queries. First and foremost, what do you think causes autism, and do you think they will find a cure? And something that really has me at my wit’s end: over the past couple of months, L has been having meltdowns - at least one every three days. Can you please advice of any strategies of what to do when L goes into a melt- down? At the moment, I ‘put’ him in the bath with a running tap (coldish water). The cause of his meltdowns we think may be due to pain (possibly internal - we are treating him for blockages in stomach) or frustration of being unable to talk and being ‘different” (he is quite intelligent, though totally non- verbal) or something else we haven’t thought of. I’m recovering from a meltdown and a big day with L.
I’m searching for answers and I’m at my wit’s end....
Ans: Your situation is similar to families across the world, dealing with complex situations and without sufficient support. The cause for autism is yet unknown though there is a great deal of research underway in different parts of the world. Current findings lean towards a combination of factors and there being a genetic component, though the exact genes or combinations of genes is yet unknown.
Given this, there is as of now no cure for the core difficulties in autism and it is extremely difficult to predict, despite frequent hype in the media, whether there will be a breakthrough with regard to finding the cause and hence a cure for autism in the next 50 years! As you rightly note, behaviours have a reason though the reason may not always be apparent to us. Every behaviour serves a function: it gets the person something he wants: something to eat, drink, do – such as get to go out etc, gets him attention, gets him out of a situation or activity that he does not want or finds unpleasant, gives him some sensory input, and so on. Further, a behaviour may not always be for the same reason; reasons can change. Let’s take the example of a friend sitting in a cafeteria and fanning her hands vigorously in front of her face. We would react very differently depending completely on why she was doing what she was doing, isn’t it? For instance, if it was a particularly warm day and she was trying to cool herself off, we’d probably switch a fan on or increase the speed of the fan in the cafeteria. On the other hand if she has eaten something very sharp, we may want to offer her something sweet to ease her discomfort. But if she was just getting rid of a fly that had been buzzing in front of her face, we may do nothing. So you are absolutely right when you say that there could be many variables leading to L’s meltdowns. It is entirely possible that his meltdowns happen at different times for different reasons. It would therefore be extremely important to try to understand the reason behind each time he has a meltdown, because the strategies that one would use would vary based on the reason. You have mentioned that you put L in a bath of running water. Is it that he enjoys the bath and that you feel that it may help ease the pain that you think he is having; or is it a punishment? If it is the former, I do understand the need for us as parents to want to ease our children’s discomfort. However, we may want to consider here that, if L really enjoys a running bath, given the fact that he may not be able to ask for it, his meltdowns at times may be his way of communicating that he wants a running bath and not because he is in pain.
He may have learnt from past repeated experiences that when he has a meltdown he gets a running bath, just like a child who can say “I want a bath” learns by repeated previous experiences that by saying these words he can get a bath. If on the other hand you are using this as a punishment, the thing to consider is whether the behaviour that was being punished has reduced. If not, then perhaps this punishment is best discontinued. To get an understanding of why your son has his meltdowns, it might be a good idea to try and keep a record of each meltdown for a period of ten days to two weeks. This would be a bit of extra work, but would be worthwhile. You would want to keep track of the following:
- Anything that you feel might be triggering the behaviour. Here you would note what took place before the meltdown: when and where did the meltdown occur; who were the people present during the situation, what did the people around say or do before the meltdown happened; is there any other meltdown that usually happens before he has a meltdown? Does the meltdown happen more with any person? Less with any person? Does it happen more when you are out/at home/at school/during bedtime/etc.
- The meltdown itself: what exactly did the child do or say? How many time, viz: how many time did he shout / throw himself on the floor/ scratch / throw things. How long did each episode last: one minute /five minutes/ half hour / etc.
- What happens after the meltdown takes place. So for eg, if he throws himself on the ground, what happens then? Does anyone say something? Do something? Is he given something? A chocolate/ an outing / a meal / a bath/ anything? Once you have this information to refer to, you may have a clearer picture on why L is having the meltdowns and accordingly take some pre emptive measures as well have an idea on actions to take when the meltdown occurs. Of course it will also be essential to give L appropriate alternative outlets for his behaviour
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Year published in: 2011