Tito's story and Com DEALL
Tito has had a long clinician – student relationship with Dr Prathibha Karanth, the Founder- Director and Managing Trustee of the Com DEALL Trust. This is their story –
"Tito first came to the All India Institute of Speech and Hearing (AIISH), Mysore, India, with a referral for a hearing assessment from the department of psychiatry of Christian Medical College (CMC), Vellore; India in April 1993. He was then 4 years and 8 months old and was being investigated at CMC for autism. The audiological evaluation at AIISH suggested that his hearing was within normal limits. The psychologist’s report while listing several characteristic signs of autism recommended further observation to confirm the diagnosis. What drew attention to Tito was the observation that while he hardly spoke, with assistance from his mother, he spelt out complex words and phrases in English. The method used was to grasp the mother’s wrist and direct her pointed finger at the letters on an alphabet board – what to us appeared as a version of the facilitated communication that had resulted in heated debate in the United States not too long ago. His mother carried a little notebook that documented the snippets of conversation and poetry that had reportedly emerged from this nonverbal, seemingly autistic child of 4 years; the content of much of which was well above the capabilities of his peers. However, given the particular mode of communication used there was understandably considerable skepticism whether what was being spelt out were indeed his responses. It was within this background that we offered Tito therapeutic assistance if they so desired.
Tito was found to have poor attention, marked hyperactivity, self stimulatory, stereotypic movements, lack of eye contact, strong food preferences, preference for experiencing sensory stimuli through atypical modalities and difficulty in initiating motor movements particularly in the oral area. He also failed to use simple gestures and to initiate any social interactions with another person. There was also failure to exhibit patterns of vocalization in terms of varied intonational patterns and lack of response to sounds by vocalizing, all of which behavior is seen in children between the ages of 12-18 months. His difficulty in initiating oral motor movements, were coupled with difficulties with chewing, sucking, gargling and spitting. He had to be fed and was clumsy while eating. In addition he seemed to depend on his mother for most of his daily activities including putting on his shoes and socks and brushing his teeth, all suggestive of developmental apraxia of speech.
Tito began his therapy in August 1993, when the mother and son duo relocated to Mysore. Along with daily one on one sessions of an hour with Dr. Karanth, he received additional help from the students posted in the AIISH therapy clinic on a daily basis. Once he had settled into a routine, with his consent, we put in a therapy program that emphasized motor drilling and speech motor skills. In addition we base-lined his capabilities in terms of other fine motor functions and all the fine motor coordination tasks that he failed to do were taken as therapy goals. These included tapping given patterns, clapping given patterns, palm form recognition, thumb and finger circle, rapidly reversing repetitive hand movements, tandem walk, standing on one leg, skipping, closing of eyes on command and while standing, walking backwards, jumping across distances of 1 to 3 feet, jumping from heights 1 to 3 feet, running rapidly up and down staircases with steps of differing heights, kicking objects placed at different heights and climbing spiral staircases. By April 1996 Tito had achieved success on all of these except the spiral staircase, which he feared the most.
Tito’s responses physically were that of a child, emotionally that of an adolescent and intellectually that of an adult. It was during these sessions that we worked through issues such as his hatred of the word ‘autism’, his reluctance at being tested and his distrust of the medical professionals, in addition to a discussion of other more complex issues pertaining to autism per se, checking out issues that related to specific features of autism such as the difficulty in making and maintaining eye contact and the need to flap, among others. What emerged was a range of difficulties/differences both in processing information through the various sensory modalities either in isolation or in combination, as well as difficulties/differences in executing motor functions especially when required to do so.
Even more importantly it was during these sessions that Tito became aware that the rest of us perceived and experienced the world differently than him. For instance Tito often ‘saw’ visual images of people and objects that were not physically present, yet at the same time had difficulty in focusing on and accurately locating people and objects that were present in a given physical environment. Similarly he complained that while listening to speech he had to concentrate hard as the words sounded like a series of speech sounds rather than as unitary words – similar phenomena that is increasingly being scientifically documented in children with other developmental disorders such as Specific language Impairment (SLI) and other Language Learning Disabilities (LLD). Paradoxically as per our observation, for all practical purposes he was processing speech in real time like the rest of us. These are but a couple of examples of the several problems that we tried to work through.
Following Dr. Karanth’s relocation to Bangalore in 1996, Tito and his mother also relocated to Bangalore in early 1997 and Dr. Karanth continued to work with him at the S. R. Chandrasekhar Institute of Speech & Hearing, Bangalore. Therapy at SRCISH focussed on improving the intelligibility of his speech. Concurrently we made efforts at increasing his independence and socialization. Given that we did not have access to aides, volunteers from among the students spent some of their time during the weekends in extending his social activities to an occasional movie or a visit to the hostel.
At the age of 9 years, Tito wrote his autobiography narrating his early experiences as an autistic child in India. The British National Autistic Society published Tito’s autobiography titled ‘Beyond the silence: my life, the world and autism’ in 2002 (N.A.S publications: London). Around the same time the British Broadcasting Corporation aired a documentary titled ‘Inside Story – Tito’s Story”, produced by one of its teams (aired on BBC 1 on the 21st of May 2000). From 2002, Tito became the focus of considerable media attention in the United States. However, the international media (Sandra Blakeslee, 2002, ABC News, 2003) has repeatedly and consistently portrayed the story as being one of total professional neglect in India, the country where Tito was born and reared till the age of 12 years and where he did in fact receive considerable help at no cost. This despite the fact that Tito himself has documented and acknowledged the professional help he received and benefited from, during his early years in India.
By 2002 Tito had moved to the United States but other parents of children with ASD increasingly sought our help in working with their children. The over 2000 hours of ‘one on one’ sessions that we had with Tito over a period of eight years has culminated in the development of an intensive early intervention program for children with PDD/ ASD and other such developmental disorders, named the Communication DEALL (Developmental Eclectic Approach to Language Learning), program. The Communication DEALL program inaugurated by Tito on 1st November 2000, started at SRCISH, Bangalore as an experimental program with 12 children, in the age range of 2 to 5 years, diagnosed as being within the Autism Spectrum Disorders. It aims at integrating children with these disorders in regular school with intensive preschool intervention.
The insights gained from our work with Tito holds significant implications for the understanding of Autism. The growing numbers of such families coupled with the results of a survey of facilities for these children in Bangalore were the immediate catalysts for the setting up of the program in November 2000, as a tentative trial project. It was the experience built from the many children that we had worked with earlier coupled with the insights that were gained during our work with Tito that led to the therapeutic framework for the Communication DEALL program. Given the progress seen in the first batch of children by April 2001, the program was continued subsequently. During the last decade the Communication DEALL program has been tried with a few hundred children, with constant updates in order to further enhance its efficacy. A recent controlled study on 30 children has helped establish its efficacy scientifically as required by evidence based practice (Karanth, Shaista and Srikanth, 2010).
Tito recently visited the Com DEALL Trust to meet his mentor- his ‘Kaki’, Dr Karanth, once again. His visit, though brief was impactful. He even wrote a poem out to her, on his return home.
Tito (second from right) at the Com DEALL Inauguration - November 2000