The Invisible Disability Needs Technology There is a need for technical or programming expertise to assist in developing or modifying tools to integrate technology in the treatment of autism By Shally Makin
ooking at her one year old child, a mother thought “Am I just being paranoid because I’ve only dealt with atypical children all these years?” On the other hand, paediatricians took it very normal for an infant to have issues such as an act of latching on or feeding problems, a domino effect such as trouble sleeping, crankiness or not being able to hold up her head even
after four months. With regular checkups, the child was now confirmed with autism spectrum disorders (ASD). The parent of the child was not sure if she will be able to make the two ends of the rope meet for her daughter. With every milestone she completes, she is not sure if the struggle is about to complete or rather start with her increasing years. The long-term prognosis is not clear for a child living with autism, which is generally referred to as an invisible disability.
Autism is shaping into an epidemic, with the staggering number of autistic patients reaching to one in every 110 children today. The surveys also show that there are 67 million people, who are suffering with autism worldwide. Autism is used to describe a group of complex developmental brain disorders. The individuals don’t properly understand and respond to what they see, hear and sense, which can result in problems with social relationships, communication and behaviour. Mostly people don’t understand why the child behaves absurdly or has a temper tantrum, which concludes that he is guided under bad parents. Mythily Chari, Founder Trustee, Commandur Foundation, defines autism as “A condition and not a disease, so the very outdated terminology borrowed from medical field, treatment, patient, etc need to be deleted. In this context what I propagate is teach; do not treat Autism. There is no cure, one lives with the condition. However training, those who fall in the spectrum will, to a great extent, decide whether the child will attend college later in life or fall by the way side.” There’s not a direct cause of autism that is supported by evidence or research study. There is a whole range of treatment options, medications and behavioural therapies, but they lack in solid evidences. There are a number of interesting studies around genetics but they too as well don’t lead to any conclusion. There are presently two drugs lined up for treatment, risperidone and aripiprazole, which show benefit in reducing some behaviours, including emotional distress, aggression, hyperactivity and self-injury.
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“One take home message for parents and caregivers is ‘use technology and assistive devices’ to unleash the potential of your child” Mythily Chari Founder Trustee, Commandur Foundation
Dr Roma Kumar, Senior Consultant, Clinical Psychologist, Sir Ganga Ram Hospital, believes in “Educational and communication focused interventions for treatment of Autism. With more than 35 years of empirical data supporting its efficacy Project TEACCH (Treatment and Education of Autistic and Related Communication-Handicapped Children) is an intervention programme model that integrates behavioural and cognitive theory, includes parents as cotherapists, and emphasises long-term treatment and support from early childhood through adulthood.”
There are various seminars being conducted across the globe along with a number of technological advances, which offer courses for such patients. Out of the numerous such programmes, one was funded by Autism Speaks Foundation in 2010 – “Innovative technology for Autism Spectrum Disorders” which united the fields of engineering, occupational science, neuroscience, psychology and anthropology to give a full view of the technological advances in the world of ASD. Such courses give a ray of hope to parents as they open up a whole new world to explore, learn and be optimistic to understand the lives of individuals with ASD. Teachers of autism patients are required to determine trends and monitor progress to
It is vital for behavioral clinicians and researchers to partner with programmers and engineers to create a technological product for revival and treatment for autistic patients. Teachers of autism patients are required to determine trends and monitor progress to document and analyse disturbing behaviour over weeks or even months document and analyse disturbing behaviour over weeks or even months. Dr Roma Kumar further adds, “The PECS helps autistic children spontaneously initiate communication, while learning the function of communication (Frost & Bondy, 1994). Impairments in
“Technology, the practical application of knowledge to a particular area, a core human ability aids in diagnosis and treatment of children with autism to lead satisfying and fulfilled lives” Dr Jitendra Nagpal Senior Consultant Psychiatrist Moolchand Medcity
language development and communication are primary features of autism, and inadequate child communication can result in extreme frustration and serious maladaptive behaviours (e.g., head banging and tantrums). PEC has recently gained popularity because it promotes functional communication.” There is a device, called Selective Archiving, which records video of a classroom and saves the section of video to be analysed for behavior of the patients later. Another device, Visual Scheduler (vSked for short), which automatically helps students to point to an answer and if they pick the wrong one, the correct button shakes and turns colors. This further eliminates the need for a teacher to physically point to the right answer. The other
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such application is the Picture Planner, which is basically an icon based personal organiser to teach individuals with autism and other developmental and intellectual disabilities. Dr J Nagpal Senior Consultant Psychiatrist, believes that “There is a diverse application of technology-based interventions with children with autism, introduced as a temporary instructional aid to be removed once goals of behavior change have been met, such as tactile and auditory prompting devices to direct behavior; video-based instruction and feedback; computer-aided instruction to recognise and predict emotions, enhance problem solving, enhance vocal imitation and improve reading and communication; virtual reality affords incomparable control over the environment to promote learning; and robotics used to teach basic social interaction skills.” The latest in the league is the fully functioning prototype capture and access applica-
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specialty tion called ‘Abaris’. It is specially designed to support therapists conducting Discrete Trial Training therapy. This application increases the accuracy of data collection and reduces the amount of time the therapist spends doing manual calculations. The PECS Training Manual provides all of the necessary information to implement and guide readers through the six phases of training and provides examples, helpful hints, and templates for data and progress reporting. The LENA (Language Environment Analysis) system is digital language processor and language analysis software. It enables automatically labeled infant and child vocalizations from recordings and thereafter an automatic acoustic analysis designed by the researchers to show that pre-verbal vocalizations of very young children with autism are distinctly different from those of typically developing children with 86 percent accuracy. It is a supplement language enrichment therapy which allows parents to use technology at home. True Object Based Icons (TOBIs), cut outs of actual
“Picture Exchange Communication System (PECS) helps autistic children spontaneously to initiate communication while learning the function of communication” Dr Roma Kumar Senior Consultant, Clinical Psychologist Sir Ganga Ram Hospital
shapes or outlines with printed word labels, is another application being used by educators to make autistic patients understand. Mythily Chari adds “Somehow children with autism are hardwired for machines. They take to the physics and mechanics like duck to water. Parents should introduce the children to the print or lexicon, be it through educational CDs, TV or the mobile phone.
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They can communicate by typing rather than speaking. We are indeed lucky to be in this age of technological innovation at every step to augment communication it can be utilized with innovation and imagination.” It is vital for behavioral clinicians and researchers to partner with programmers and engineers to create a technological product of revival and treatment for autistic patients.