Success....

Often when a new parent walks into my clinic, it is not uncommon for them to ask me how many of my past clients have been “mainstreamed”. As a therapist I am willing to acknowledge that the success of intervention lies in how near “normal” the child has reached. But as a human being I often wonder if a child is a success only if he goes to a mainstream school? how can we ignore the success of the child who despite all odds, stood tall in every task he completed? Are academics the only measure of success? At times like this, I often remember a mother and child who I taught sometime between 2004–2008. 

I first met Maher and Rahath when Maher was 4 years old (Names not changed, they deserve the credit for what they have achieved). He had already been through an early intervention programme and was referred to me as a child who was not ready to enter the mainstream. 2 or 3 years down the line, Maher had still not entered the mainstream and he went on to join the special school I was running in those days. 

At 5 Maher could sight read a number of words. He could do simple addition. And by 6 he was a whiz at using Microsoft Paintbrush. Every image he created on Paintbrush was a wonder for us. He had taught himself to use Paintbrush with absolutely no help whatsoever. And he wouldn’t allow any interference with it to the extent that Rahath would save the images after tricking him away from the PC. Rahath never stopped marvelling at his ability. She herself was technologically challenged in those days. All the while Maher remained minimally verbal. Drawing words out of him was more challenging than pulling teeth with a pair of tweezers. 

This was a mother who had totally devoted herself to her children. She was staying here in Bangalore solely for Maher as she felt that the place where her husband worked did not have adequate special education facilities. With a lot of persuasion, she finally moved back with her husband. But she never forgot the early intervention years and remained in touch.

Whenever someone asks me about my successes, it is so hard for me to disregard Maher. I know that if I speak of Maher to a young parent, he/she might feel disheartened. He/she might even feel if this is a success then what can we really expect out of this therapist. Yet Maher had been diagnosed as severely autistic. Yes, he is still minimally verbal. But his mother never gave up on him. And she never stopped appreciating him. Every visit to Bangalore she never forgot to meet me and thank me. When I asked her permission to use his video for this write up, her reaction was, “you are his guru Vanitha, you can use it”. 

Rahath’s belief in her son and her determination to help him at all cost is something that needs to be lauded. Yes, the child who goes to mainstream is a success but these are the real heroes. Heroes who never stop the hard work. Unlike many parents who drop out of intervention programs as soon as the child learns to speak, these children slog all their lives, just to learn every little task others take for granted. And unlike many teenagers who may not pick up their scattered belongings in their room, Maher, takes pride in pouring out tea for his mother, running the washing machine for her or even putting away her shopping. How many mothers are able to say that their child helps so much around the house?

I would like to share this little video of Maher undergoing training at his vocational centre. Proud of you Maher and Rahath!

"Bad Boy!"

“Bad Boy!” “You are such a Bad Boy!” How many times have I heard a child being berated in this way? Way, way too many times. Not just by parents but also by the supposedly trained and educated professionals.

Would these same people like it when they are told that they are “BAD”? “You Bad Mum”, “You Bad Dad”, or better yet, “You Bad Therapist”.  How many of us are willing to take criticism with grace and dignity even when it is couched in diplomatic language? And yet we have no qualms about correcting our children in the most negative manner possible.

Is the person bad or the behavior bad? Why do we persist in labeling the child when it is the behavior we are unhappy with? We speak so much about not labeling the child at the time of diagnosis and speak about addressing the challenges instead. And yet, there is no hesitancy in using a label which is far worse than a diagnostic label of ASD.  

Let us briefly look at few characteristics of individuals on the autism spectrum.

1)     Individuals on the autism spectrum have a literal understanding of language. So when you say “Bad Boy” and think of how a child on the spectrum views this statement, it can take on a much more serious meaning than when a neurotypical child hears. Under no circumstances am I considering this a lesser crime when used with neurotypical children, but I am saying that the interpretations can be different for different children.

2)     Individuals with autism have poor social motivation. This means that they are generally not motivated to interact with others. Would they really want to interact with people calling them bad?

3)     Many individuals on the autism spectrum have echolalia. It is not uncommon for the child to turn around and call you bad. Or call someone else bad. Use the language you would like your child to speak.

4)     Many of them have high levels of anxiety. They feel anxious about any kind of social interaction even without the added pressure of being told that they are bad.

5)     Many high functioning children can have low self-esteem. Once they join school they also have to deal with bullying in school. The last thing they need is for their parents and care-givers adding to their problems.

When you are unhappy about your child’s behavior, it would help if you clearly state what it is you would like him to do. Stop and think through, what led to his behavior. Very often there is a reasonably good explanation. Maybe the child cannot say it to you in so many words, but careful, quiet observation on our part can help us understand why certain “bad” behavior occurs and we can always take steps to correct. And if you must use the word bad, it would be so much better to say, “bad behavior” instead of “bad boy”. Or what about saying, “that’s a naughty thing to do”.

"My child is so stubborn"

"My child is so stubborn", how many times have I heard that from both parents and the not so aware professional. Can a child with any kind of developmental disabilities be wantonly stubborn??

The other day, I heard this from a family member and I said, "give me an example of when he is stubborn". The reply I get is, "he can say appa but never says it when I ask him to" ??!! Did you forget the diagnosis? He's practically non-verbal. Yes, sometimes neurons fire right, sometimes they don't. Sometimes he can say a word, sometimes he can't. 

Now if you think this is bad enough, another mother tells me that the speech therapist and occupational therapist are complaining that the child has become very stubborn after the vacation and refuses to work. Excuse me! But isn't that why the child is in therapy? Because he cannot always respond like a neurotypical? How does it help if you send the child back to the mother with a "complaint"? And yes, this post is aimed more at these therapist than any parent (if it is not too beneath them to read this).

There can be many reasons why a child refuses to do what he is being asked to do. The most common reason is actually the simplest one - because he cannot to what you are asking him to do. No doubt he may have done that particular task before, but remember, the child has difficulties. He may still be in the process of learning the task. He may need you to start him off before he can take over and finish the task. He may be having an off day and cannot get the start, the sequence or the whole task. This can apply to speech, fine motor, social skills or any aspect of development.

The child with developmental difficulties is not learning speech/fine motor control/cognitive tasks in the same way as a neurotypical. He is learning it with a lot of effort, after multiple tries and very often in a different way. Only he knows what effort he has made to say "appa" or to sit at the desk and work during a session. He needs to work at it over and over again before it becomes second nature to him and for some it may never become second nature. It may remain forever hard.

Is the child any less because of it? Of course not! Unlike you, he's getting back on the horse no matter how many times he falls off. If he is stubborn, it is in a good way because he hasn't given up despite all your attempts to brow beat him into being the way you want him to be.

Another reason why the child may refuse to do an activity could be because the Individual Education Program (IEP) planned for him is totally inappropriate. You may be attempting a task that he is not ready for. Any goal that is set for a child needs to be appropriately planned for and at the appropriate developmental level of the child. You can't expect the child to do something just because it is age appropriate. He may be chronologically 4 but developmentally 2 years old. Rethink your IEP if you are persistently having difficulties getting your child to do a particular task.

Always look for reasons why a child is not doing something before concluding on "bad behaviour" as the cause. And it is okay if you don't always find an answer. There may be none.

Understanding Therapy in Autism – IV - Encouraging Language Development

Communication is not just about getting our needs met but about sharing ideas, information and emotions. It is also about seeking information and gaining knowledge. Too often we make the mistake of sending the wrong message to our children. We constantly bombard them with questions and imperative statements demanding answers, answers they may not be able to readily give you. This kind of pressure makes the child feel like he is constantly being tested every single minute and he/she might “switch off”. Or worse still the child may try to deflect your attention by indulging in inappropriate behaviour.

There are a few simple ways in which we can change the way we communicate with the child in order to ensure that he communicates better.

1)     Talk Less - Yes, that’s right, you need to talk less. Constant jabber, jabber can be very irritating for any one, more so for a child with language difficulties. Quality in place of Quantity. You could use more non-verbal communication – pictures, voice modulation, gestures and facial expressions. Keep it interesting.

2)     Use Positive Language – Tell the child what to do and not what not to do. Nothing puts a child (or adult) off more than hearing the word “no”. And he’s likely to hear it more often if he still hasn’t learnt “appropriate” behaviours. Most children will either stop listening or will try to irritate the adult by doing exactly what they are being told not to do. Instead of saying “don’t hit”, trying saying, “hands be good” or “hands still”. Instead of saying, “don’t run”, you could say, “walk with me”. Try this with your spouses as well and see your relationship improve!

3)     Use Declarative Language – Constantly using imperative language which demands a response from the child can result in him/her clamming up. Too often the child is unable to answer. Sometimes as the child is learning to speak, he may just end up echoing your questions. He may also learn that the only purpose of language is to question and make demands. Language for the social sharing should be our final goal. Try parallel talk. Say the things that you expect the child to say. When you do this, you need to remember to drop the word, “say”. Example, “Bye aunty”, not “say bye aunty”. Do you like people constantly telling you what to say?

4)     Use One Language – In our multilingual scenario, it is important to stress on the use of a single language for the child. The same language should be used for general communication and therapy. And the same language for reading and writing. Too often, I have found parents insisting on the child learning to speak the mother tongue (which is fine) but they never teach the mother tongue for reading. They insist on reading and writing in English! And the child doesn’t understand a word of English because he has only been exposed to the mother tongue. A child with language difficulties may not be able to switch between languages and the first language he learns could very well be the only language he learns. Some children do go on to learn the second language but the first language may remain a strength.

Understanding Therapy in Autism -III

In the third part of our understanding therapy in autism, I will be talking about autism specific methodology. This refers to how one talks to/interacts with children on the autism spectrum. This can govern every aspect of life, all day long. Obviously this is one post that is going to stretch into several!

Several researchers and autism self-advocates have contributed considerably towards our understanding of best possible ways to interact and initiate communication among individuals on the autism spectrum. 

Three of them stand out in my mind - Eric Schopler, Gary Mesibov and Temple Grandin. The last one is an adult on the spectrum and has had a tremendous influence on the world of autism through her book "Thinking in Pictures" - a must read of people who wish to understand the spectrum better.

Eric Schopler and Gary Mesibov have been directors at Project TEACCH and are proponents of Structured Teaching. While Project TEACCH has never made waves like ABA (Applied Behavioural Analysis), it nevertheless has been around for a long time (from 1966). Several of the principles suggested by then have now been incorporated by many other methods.

I would like to dedicate this first post to the fact that most individuals on the autism spectrum are visual.

VISUAL SUPPORTS
Visual supports, to the best of my knowledge, were suggested by Project TEACCH. Visual supports received much attention after Temple Grandin's "Thinking in Pictures" was published.

Individuals on the autism spectrum are visual learners. They understand what they see far better than what they hear. This applies even to the very verbal ones. Saying that the individual can now understand spoken language is just no excuse to stop visuals. Yet, this is commonly done both by parents and many professionals.

Visuals can be used in the form of picture cards to communicate, to make a schedule or to relate a social story. Visuals should not be confused with videos. Visuals are static and convey the point much better to a child on the spectrum than dynamic videos. Visuals can be line drawings, pictures or photographs.

Visual supports help:

1. Provide predictability and thereby reduce anxiety
2. Provide clarity to the individual
3. Help the individual understand the sequence
4. Reduce stress for both parent and individual
5. Help teach language
6. Help jog the memory 

TYPES OF VISUAL SUPPORTS

First & Then Cards

This consists of 2 pictures in a sequence which tells the individual what he will do first and what next. This can be used to provide clarity and also to help manage difficult behaviours. By putting a preferred activity after an activity that is disliked, we can help ensure that the disliked activity is carried out. 

First eat

Then go outside

Visual Schedules

This is a pictorial schedule that tells the individual what is going to happen through the day or a part of the day. It makes the routine predictable and also helps the individual organize the sequence in which the tasks should be carried out. This can be used to indicate all the activities that the individual has to do at his workstation or it can be used to indicate his daily routine. This can also be used to indicate part of his day's routine.

Shower

Eat

Go to school

Behaviour Support Cards
These cards are pictorial representations of expected behaviour. These can be flashed when communicating with the child, reinforcing the spoken word. For example, flash a picture of a child sitting on a chair, to indicate that you would like him to remain seated.

Image credits: www.do2learn.com

Some facts on Autism Spectrum Disorders

The Importance of Early Intervention

Understanding Therapy in Autism –II

Now that we have established that there are autism specific therapies, let’s look at it in more detail. There are two aspects to this – autism specific methodology and autism specific curriculum.

Autism specific methodology refers to how to teach/interact with a child on the autism spectrum and shall be the topic of another post (or several other posts).

Autism specific curriculum refers to what to teach. One of the first autism specific curriculums to be published (to the best of my knowledge) was the Psychoeducational Profile (PEP). This was published by Eric Schopler and Robert Reichler from Project TEACCH way back in 1976. Currently in use is the PEP-3. They also have a preschool version of the same.

There are several autism specific curriculums available in the market today:

1. Psychoeducational Profile 3 (from Project TEACCH)
2. Teaching Developmental Disabled Children-The ME Book (Ivar Lovaas, 1981)
3. Behavioural Intervention for Young Children with Autism (Catherine Maurice, 1996)
4. ABLLS - Assessment of Basic Language and Learning Skills-Revised (James Partington, 2006)
5. VB-MAPP – Verbal Behaviour Milestones Assessment and Placement Program (Mark Sundberg, 2008)
6. Early Start Denver Model Curriculum Checklist for Young Children with Autism (Sally Rogers and Geraldine Dawson, 2010)

All these curriculums focused on all areas of development –

·        Motor development

·        Language and communication

·        Cognitive development

·        Social skills and behaviour

Skills in each area have been sequentially laid out which will help make a clear decision on what to teach the child. Some of the areas of development have been further sub-divided into different areas in some of the curriculum protocols. For example, in the ABLLS, language and communication is actually assessed through several functional areas.

The functional areas dealing with language and communication in the ABLLS are:

·        Receptive Language

·        Vocal Imitation

·        Requests

·        Labelling

·        Intraverbals

·        Spontaneous Vocalizations

·        Syntax & Grammar

Frequently when children are referred to intervention centres, they come with a diagnostic report which is not sufficient to make the decision on the curriculum planning. However, having gone through a lengthy assessment process at the referral centre, most parents get extremely upset at the thought of going through another assessment process. While we empathize with the parental stress, it is still something that needs to be done in order to formulate an appropriate individualized curriculum for difficulties while the assessment being carried out at the intervention tells us what the child can and cannot do. This in turn helps the therapist make a decision on what to teach. Sadly, many diagnosing physicians are also not aware of this and do not counsel parents accordingly when referring them for intervention.

The essential difference between these two assessments is that a diagnostic assessment tells you which developmental disability label best describes the child while a functional or curriculum assessment tells you where to start in the intervention and what to include in the curriculum.

These curriculums protocols can be used by any professional, speech therapists, special educators or psychologists. They can also be used by a parent with some amount of training. The individual therapists can either work with different functional areas related to their field of training or they can work with all the functional areas. A therapist who is working with all the functional areas in a given protocol will essentially be taking care of all the areas of development.

Even if the therapists are not using these protocols, parents must educate themselves to ensure that the curriculum that the therapist has planned is not too out of sync with the child’s developmental levels. It is not uncommon to see therapist using a regular pre-school curriculum despite the fact that the child has not even reached pre-school level in his or her development. For example, I have seen a toddler being taught “what does a cow say?” when in reality he has not even learnt to identify a cow.

Understanding Therapy in Autism

Autism is a neurodevelopmental disorder that affects the way in which the individual communicates and interacts. It is accompanied by a restricted and repetitive way of thinking. Around 31% may have intellectual disabilities while the rest range from borderline to above average IQ.  Affecting around 1 in 59 individuals, the impact on society is huge.

The cognitive profile is unique with difficulties in executive functions and theory of mind. They also have a detailed focused processing ability which can result in exceptional abilities in some areas. While these exceptional abilities are often hyped by mainstream media, these abilities also intrigue researchers. Due to this unique cognitive profile, no two children on the autism spectrum are alike. This in turn has given way to myriad different methods to try and reach the child with autism.  The proponents of each methodology are generally insistent on their method being the only method that will help the child. However, they often tend to forget that the disparity in the profile from child to child can result in each child requiring some changes in the rehabilitation method.

Over the years the diagnostic criteria have been refined and the disorder has moved from being classified as “childhood schizophrenia” to “pervasive developmental disorder” to currently being classified under “neuro-developmental disorder”. The developmental differences in joint attention is now firmly established with joint attention being used as one of the criteria during screening/diagnosis. Better understanding of the developmental origins of the disorder has led to the incorporation of developmental approaches to intervention.

Therapies such as the Holding therapy were discredited early on as Applied Behaviour Analysis gained popularity. The Structured Teaching approach emanating from the Treatment of Autistic and Communication Handicapped Children (TEACCH) emerged in the early ‘70s even before Ivar Lovaas hit headlines with his publication on ABA. However, proponents of Structured Teaching never had any statistically sound publications and hence took a back seat to ABA. Nevertheless, the visual supports recommended by the TEACCH program were soon incorporated into most of the autism specific methodology that emerged later. Despite the popularity of ABA, the fact remains that the Lovaas’ study was never replicated again.

A developmental approach to intervention is one which incorporates the developmental sequence in each area of development into the curriculum and it is most often child-centric. Almost all development based interventions emphasize the importance of the involvement of parents in the intervention program.

Apart from the TEACCH program, the last decade has seen the emergence of several intervention models based on the developmental approach. These include Early Start Denver Model (ESDM), Joint Attention, Symbolic Play, Engagement and Regulation (JASPER) and Relationship Development Intervention (RDI). These approaches have successfully shown that incorporating critical developmental goals such as joint attention into the program can result in maximizing communication development among children with autism spectrum disorder.

TEACCH: The TEACCH program was first developed by Eric Schopler and his team at the University of North Carolina. The focus of the program is structured teaching. The structure is provided in the form of physical structure of the environment, visual schedules and arrangement of activities. There is a strong emphasis on individualized curriculum which is determined by the detailed assessment protocol. The program can be implemented by anyone with the training. This can be a teacher, psychologist or speech therapist. They have their own curriculum (called the PEP3 or the Psychoeducational Profile 3) which can be used to formulate the individualized program. The areas of the curriculum include communication, motor and behaviour. These are further subdivided to include cognitive, expressive and receptive language and fine and gross motor among other things. Every section can be addressed by the primary therapist/parent. Alternatively, if there is a team working with the child, then the communication aspects can be handled by the speech therapist and the motor aspects by the occupational therapist.

The Early Start Denver Model: The ESDM approach has fused a relationship based approach along with behavioural principles and a developmental curriculum. It is delivered in natural settings. Anyone can be trained in the approach, a speech therapist, psychologist or educator. The approach relies heavily on parent involvement. ESDM again has a curriculum that can be used by the team members. In addition to motor, cognitive and language, ESDM has also a sequential set of tasks to work on joint attention skills.

Joint Attention, Symbolic Play, Engagement and Regulation: Like the ESDM, JASPER also integrates developmental and behavioural principles. Using naturalistic strategies, the model focusses on the core deficits of joint attention, imitation and play to improve social communication. The program is implemented by parents and teachers.

Relationship Development Intervention: This family based therapy has the parent as the primary therapist. The focus is on building social and emotional skills of the child. Developmentally appropriate objectives are applied to everyday life situations and the principles of RDI are incorporated into day to day interaction. The curriculum offered by RDI focuses primarily on social-emotional skills. Those who follow this will do well to use the curriculum from one of the other models to work on the cognitive and motor aspects of development.

Early publications of using ESDM and JASPER have been promising and emphasis the need for a developmental approach to intervention in ASD. Both ESDM and JASPER have used randomized control trails.

These intervention models have the following commonalities:

1)     They acknowledge the cognitive/developmental basis of the child’s difficulties. Autism Spectrum Disorder results in a unique cognitive profile and only when we take this into account can we decide on how best to teach/reach the child.

2)     These intervention models are all child-centric. A lot of emphasis is laid on understanding the child’s perspective. The child’s interests, likes, dislikes and learning style are all incorporated into the program.

3)     The intervention follows the developmental sequence in all areas – cognitive, communication, fine motor and oro-motor. They have a curriculum that can be used to formulate the individualized program for the child.

4)     Parent involvement is important and often act as co-therapists or primary therapists.

5)     While the therapies acknowledge the importance of different professionals like psychologists, special educators and speech therapists, success of the intervention is contingent to following the specific methodology. All the professionals involved in the intervention program are trained to follow the methodology.

Awareness of different intervention techniques is sadly lacking in our society. No doubt you will find individual therapists equipping themselves with some methodology that they are able to relate to but these are few and far in between. These courses are not readily available in India and when there are workshops, most of them are out of reach of the average therapist. Most will follow whatever they have learnt at their basic university courses which does not impart more than 4-5 hours of instruction on the disorder. This leaves the parent with little choice but to take what they get. In this scenario it becomes especially important for parents to empower themselves in understanding the current therapies available. They need to be actively involved with the child’s therapy and participate in the decision making for goal setting and choice of methodology. Blind reliance on incorporating speech therapy/occupational therapy/behavioural therapy as prescribed by most diagnosing physicians, leads to parents cramming the child’s day with therapies with no regard to the child’s developmental level. The much touted multidisciplinary approach results in the child being pulled and pushed in all directions and the parent poorer in the pocket. This is not to say that these therapies have no role to play in the intervention program. Let us take a brief look at the individual therapies normally suggested by doctors in India.

Speech Therapy: Children with ASD may or may not have speech difficulties. What all of them do have is communication and language difficulties. The core deficit in communication is the joint attention difficulties faced by the child with ASD. The speech therapist needs to understand the core deficits of the child with autism and should use one of the autism specific models of therapy. The speech therapist also needs to use a developmentally sequenced curriculum to ensure progress of the child.

Occupational Therapy: Occupational therapy helps take care of some of the sensory and motor planning issues that the child with ASD might face. Again, one needs to remember that most occupational therapists in India do not get more than 4-5 hours of instruction in understanding ASD. They would all benefit from understanding autism specific methodology like ESDM or TEACCH.

Unless the therapists involved with the intervention of the child have an understanding of these autism specific therapies, they will not be as effective as they could be. There are also instances where they end up doing more harm than good. What most professionals fail to understand is that while in the West doctors recommend a multidisciplinary approach to intervention, all those multidisciplinary teams are following some autism specific model, and are not all “doing their own thing” and confusing the child.