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.