Autism Spectrum Disorders: Introduction, Implications and technology

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Autism Spectrum Disorders: Introduction, Implications and technology

by Qazi Fazli Azeem

Sunday March 15 & 16, 2104 - MIT Spark / ESP

Caption: Qazi Fazli Azeem with the founders of Autism speaks USA, Bob and Suzanne Wright - at the Shafallah Centre in Doha, Qatar - 2008. Bob and Suzanne Wright were instrumental in creating the United Nations annual Autism Awareness Day on 2nd April 2008.

My name is Qazi Fazli Azeem. This in an introductory, interactive class about Autism spectrum disorders, the fastest growing disorder in the world.

I am here through the US State Department’s Fulbright Scholarship, for my graduate design degree. I am also a visiting researcher at the MIT Media Lab. I am the South Asian self advocate for the Autism Spectrum since my autism awareness work started in 2006. I have presented at Autism Conferences & workshops in Pakistan (2006-2012), India (2008), Qatar (2008), UK (2008) and Bangladesh (2009). I spoke at a panel at the United Nations in NY on World Autism Awareness Day 2013. My interview was published in the 2010 book by Adam Feinstein (UK) “A History of Autism: conversations with the pioneers” and my Art has been featured in the 2010-2011 “Art of Autism” books in the US by Debbie Hosseini. My essays on mentoring youth with Autism spectrum disorders have been published in the Feb 2014 book “Been There. DoneThat. Try This! - An Aspie’s Guide to Life on Earth” by Jessica Kingsley publishers UK.

Autism is a complex, often baffling developmental disability First described by Leo Kanner in 1943 as early infantile autism “Auto” – children are “locked within themselves.” For next 30 years, considered to be an emotional disturbance Very likely neurological in origin – not emotional No known racial, ethnic, or social boundaries No relation to family income, lifestyle.

A spectrum of neuropsychiatric disorders, with limitations in social interaction, communication, and unusual and repetitive behavior.

“If you’ve seen one child with autism, you’ve seen one child with autism.” -Brenda Smith-Myles

Autism is a developmental disorder, like these disorders: Cerebral palsy, Down’s syndrome, Learning disabilities and ADHD (Attention deficient hyperactive disorder)

People on the Autism spectrum are born with it. Early intervention, educational support and help can lead to independence and better outcomes later in life.

There are no medical tests for Autism, only behavior tests.

Echolalia: Common in very young children (Age 3) Immediate or delayed (even years) Is there communicative intent with echolalia?

What Causes Autism?

Good agreement in general that autism is caused by abnormalities in brain development, neurochemistry, and genetic factors

How is Autism diagnosed?

No definitive medical test Team uses interviews, observation, and specific checklists developed for this purpose. Team might include neurologist, psychologist, developmental pediatrician, speech/language therapist, learning consultant, etc. Must rule out MR, hearing impairment, behavior disorders, or eccentric habits

About 1 in 88 children has been identified with an autism spectrum disorder (ASD) 

Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (DSM-5)

Autism spectrum disorders Includes Autism, Asperger syndrome, PDD-NOS, and child disintegrative disorder (CDD) Concentrates on required features Social/communication issues Limited, repeating behaviors, interests Sensory issues

Educating children with Autism

Treatment and Education of Autistic and Related Communication Handicapped Children (TEACHH) and PECS (Picture exchange communication system) / Structured Teaching = Considers a student’s special interests, Relies on data to make or change programming, Increases independent functioning in many environments

Visual Supports: Things you can make to address student needs Schedules Calendars Choice Boards Rule Charts Lists Instructions Behavior clues

Macrocephaly: 10-20% larger brain size. Larger Amygdala Key role in the processing of emotions. This brain structure is linked to both fear responses and pleasure as well as anxiety.

Sensory overload: When people on the autism spectrum see something or hear something, they may be hyper or hypo sensitive. A larger Amygdala causes increase in fear,in response to what they hear and see. This Is called sensory overload.

Auditory Desensitization Persons on the autism spectrum often report hypersensitivity to sound. Efforts have been made to manage this condition, but there is wide room for improvement. One approach - exposure therapy – has promise, and studies show that it can help some individuals overcome sound sensitivities. The game depicted above was designed to help an individual overcome extreme sensitivity to the sound of people coughing. The volume of the sound effect increases rapidly within the short span of this video clip. However, in the actual intervention, this sound would start at an extremely low volume and would increase in a slow, hierarchical fashion, over the course of 1-3 weeks.

Special Interests Individuals diagnosed with autism spectrum disorder (ASD) often have intense, focused interests. These interests, when harnessed properly, can help motivate an individual to persist in a task that might otherwise be too challenging or bothersome. For example, past research has shown that embedding focused interests into educational curricula can increase task adherence and task performance in individuals with ASD. However, providing this degree of customization is often time-consuming and costly and, in the case of computer-mediated interventions, high-level computer-programming skills are often required. We have recently designed new software to solve this problem. Specifically, we have built an algorithm that will: (1) retrieve user-specified images from the Yahoo database; (2) strip them of their background; and (3) embed them seamlessly into Flash-based computer programs.

Emotions When autistic children get stressed they often don’t show it. Instead, their tension might build until they have a meltdown, which can result in aggression toward others and even self-injury. Since autistic children have a difficult time expressing or even understanding their emotions, teachers and caregivers can have a difficult time anticipating and preventing meltdowns.

Professor Rosalind W. Picard of the MIT Media Lab is also a co-founder of Affectiva, a company that makes wearable technology to help measure and communicate emotion, particularly for people on the Autism spectrum. The way the wearable Q sensor works is by detecting and recording signs of stress and excitement in the skin, by measuring slight electrical changes. This process is called electro-dermal activity (EDA). The curve-shaped Q Sensor is designed to wear on the wrist, so it is comfortable to wear all day at work, play, or sleep. This makes it ideal for long-term measurement in clinical and therapeutic research.

Electrodermal activity refers to electrical changes measured at the surface of the skin that arise when the skin receives signals from the brain. For most people, if your mood or emotions change, you are tired from thinking or walking, your brain sends signals to the skin to increase the level of sweating. You may not feel any sweat on the surface of the skin, but the electrical conductance increases due to salt and water in the sweat.

The Affectiva sensor tracks stress and other measures in children with autism, wirelessly transmitting the data to a computer. The recorded skin activity can be mapped and seen on screen, based on the time of day it was recorded. This can help find out if certain events were stressful or relaxing, leading to better management of the environment and awareness of emotions.

StoryScape is a social illustrated app. The StoryScape platform is being developed to allow for easy creation of highly interactive and customizable stories. In addition, the platform will allow a community of content creators to easily share, collaborate, and remix each others’ works. Experimental goals of StoryScape include its use with children diagnosed with autism who are minimally verbal or non-verbal. You can test it out at http://storyscape.io/

There is a lot of current research with robots, being used to teach children on the Autism spectrum, through prompts, voice interactions, imitated playing as well as turn taking.

The Future?

In general trend has been towards greater improvement Better adult outcomes More individuals with language Higher levels of IQ. Problems do remain, difficulties understanding ‘normal’or an ilusive idea of a ‘cure’ due to lack of understanding. Autism is genetic mutation, it cannot be removed or stopped indefinately and will not go away in the future, as numbers of diagnosed people keep increasing. Education and early intervention is the only sure way of helping people on the spectrum achieve independance. Career possibilities to help people on the Autism spectrum: Game Designers, Neuroscientists, Special Educators, Researchers (psychology).

Qazi Fazli Azeem
South Asian Self Advocate for the Autism Spectrum
Representative of South Asia at the 2013 United Nations Autism Awareness day (NY)
US State Department Fulbright Scholar
Visiting Graduate Researcher, MIT Media Lab
Global Design Ambassador, Interaction Design Association of Denmark
Member, MIT Think Tank
LinkedIn Profile