Wednesday, 15 May 2019

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.

Friday, 10 May 2019

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.