Theory of Mind

 

Theory of Mind is the understanding that other people have minds different from our own. It is the ability to attribute mental states such as feelings, thoughts, opinions, beliefs and intentions to others in order to understand social behaviour. This enables one to predict the behaviour of others in a social interaction.

This skill starts developing in infancy where it takes the form of joint attention skills. Joint attention skills comprise of the ability to jointly attend to an object of interest. It includes the ability to point towards an object of interest (initiate) or to look towards the point of another person (respond). Joint attention can be both social (social sharing and referencing) or non-social (pointing to ask for something).

Joint attention starts developing in infancy around 8-9 months of age and by the time the child is around 5 years of age, he/she should have developed a fair understanding of other people’s minds.

This ability includes many skills – interpreting emotion for voice intonation, from the expression in the eyes and face, from the situational context and from the content of the words being said.

Individuals on the autism spectrum struggle to make sense of other people’s minds. Their Theory of Mind ability is greatly underdeveloped. While it is not an all or nothing concept, each individual on the spectrum will have some degree of difficulty with it. They struggle to understand the motivation, emotion or intention of a person’s actions. It is often for this reason that they seek predictability in their day-to-day interactions. For the same reason, they also struggle to understand why they need to behave in certain ways in a given situation.

Some of the examples of the difficulties they face can include –

·       The ability to spontaneously report what happened at school once they return home.

·       The ability to play pretend games.

·      The ability to change their behaviour according to context – soft voice in classroom vs loud voice on the playground

·      This can result in social gaffes for example like a child who has previously seen a relative pass away after a hospitalization, asked a person he was visiting in the hospital if his death was imminent.

While the understanding of other people’s minds does not come in instinctively to an individual on the autism spectrum, it can be taught. Many individuals have either average or above average cognitive abilities. This cognitive strength can be used to teach them to interpret expressions and understand social situations. They will need to attain language skills of at least a 5 year old before they can be taught.

Teaching Theory of Mind skills can be done in the following stages-

·       Recognition of emotions.

·       Understanding of various situations which lead to the basic emotional states.

·       Understanding of Visual Perspectives.

·       Understanding of Situational Perspectives.

·       Inferencing from pictures.

·       Making inferences from reading.

"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.

Some facts on Autism Spectrum Disorders

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.