UN discusses use of AI and technology tools for autism care

- ADVERTISEMENT -

United Nations – While emerging technologies have the potential to include people with autism to participate in regular life, disparities in access to these technologies such as the high costs, the gender differences in caregivers and the privacy and ethics of the persons with autism were the red flags in the strides towards the future with technological advances according to a panel discussion April 2, 2024 at the United Nations Headquarters to mark the World Autism Awareness Day.

Generally diagnosed as early as 3 months of age, Autism Spectrum Disorder or ASD is a lifetime disorder with brain development at different stages displaying itself in various different symptoms, thus acquiring the name of Autism Spectrum Disorder.

Autism is considered a disability in the U.S. and persons with Autism are eligible for health and civic benefits. According to Autism Speaks (autismspeaks.org), a non-profit autism awareness and the largest autism research organization in the U.S., about 4 in 100 boys and 1 in 100 girls have autism. Boys are 4 times more likely to be diagnosed than girls.

According to a 2021 study of India Autism Center (indiaautismcenter.org) published in the Indian Journal of Pediatrics, autism prevalence is about 1 in 68 children with  boys more commonly affected or diagnosed, and with the male to female ratio of 3:1. In an April 2023 research paper published in Indian Journal of Medicine, Bhismadev Chakrabarti takes in account the growing need to address ASD in India stating that it is time India had a national program on Autism.

Three percent of the world’s population has autism, and 100,000 children born this year will have autism, with devastating consequences for children, adolescents, adults in the healthcare system and in the education system, said Dr. Ami Klin, Director of Marcus Autism Center and Georgia Research Alliance Eminent Scholar Professor and Division Chief of Autism and Developmental Disabilities at Emory University School of Medicine, Atlanta, Georgia.

Klin was addressing the panel of experts on ASD at the awareness event, “Leaving No One Behind: Autism, Emerging Technologies, and Equity”. In keeping with the Sustainable Development Goals, speakers at the event discussed how Artificial Intelligence and Technologies have the potential of allowing autistic individuals a normal life, while cautioning against the disparities in accessing technology, with an aim to ensure equitable access to technologies by all individuals with ASD.

Jointly organized by U.S. based Autism Speaks, the State of Qatar which is a steadfast partner of the global autism community, Hamad Bin Khalifa University of Qatar, Shafallah and Digital Access for All, the panel discussion was moderated by Dr. Werner Obermeyer, the Executive Director of World Health Organization (WHO)’s Office at the United Nations.

Speakers included Tomas Lamanauskas, Deputy Secretary-General of International Telecommunication Union which is a United Nations’ specialized agency for information and communication technologies. Also speaking at the event were Dr. Karin Kallander, Unit Chief, Digital Health and Information Systems of UNICEF, and Dr. Andy Shih, the Chief Science Officer of Autism Speaks. Evidence based interventions in autism were discussed by Klin.

The highlight of the event was a speech by Paul Kotler, an ASD self-advocate. Panelists included (1) Acting Executive Director of MADA (Assistive Technology Center Qatar)’s Amani Al Tamimi, (2) Deputy Secretary-General of International Telecommunication Union (ITU)’s Tomas Lamanauskas, (3) Associate Professor and Director of Interdisciplinary Programs and Co-Founder A-sense Center of Excellence at the College of Science and Engineering at Hamad Bin Khalifa University (HBKU) of the State of Qatar’s Dr. Dena Al-Thani, (4) Associate Professor and Co-Founder A-sense Center of Excellence at the College of Science and Engineering of Hamad Bin Khalifa University (HBKU)’s Dr. Marwa Qaraqe, (5) Executive Director of the Shafallah Center’s Maryam Al-Sowaidi, (6) Director Community Care Department of Ministry of Social Development and Family of the State of Qatar’s Reem Al Ajami.

Most panelists at the event discussed the potential of emerging technologies including Artificial Intelligence and machine learning, and health disparity in accessibility to these technologies.

Autism Speaks: In his opening address, Shih spoke about technology revolution related to accessing educational resources for families and caregivers of people with autism. “From groundbreaking advancements in eye-tracking that are allowing for early autism detection, to assistive technologies that facilitate greater independence, technology is empowering autistic individuals to live healthier, happier lives,” he said. He also mentioned the World Health Organization (WHO)’s online virtual Caregiver Skills Training Program, and eCST, developed and implemented with the support of Autism Speaks.

Stressing that it was time to address disparities, Shih called the World Autism Awareness Day a testament to collective commitment to address these disparities head-on.

Shih also commended the State of Qatar for its leadership in enhancing and supporting autistic people and their cause. The State of Qatar has taken up the cause of inclusion and human rights of people with disabilities and has made great strides in the diagnosis and intervention options for ASD.

 The event included presentations which illustrated the progress Qatar has made in the area of Autism support and empowerment, with specific mention of adopting in 2017 the Qatar National Autism Plan (QNAP) for the autistic and their families. The QNAP is a comprehensive plan in the region aiming to empower individuals with autism and their families to lead fulfilling lives and institutions.

 WHO: Obermeyer spoke of a 2023 joint report by UNICEF, WHO and Autism Speaks with recommendations for improving care for autistic individuals to include leveraging digital solutions for early detection and remote care services.

“WHO is giving priority to developing and establishing proof of concept for innovations and digital solutions that can benefit caregivers, but also persons with autism and other neurodevelopmental conditions,” he said.

The remaining discussions by the panelists focused on accessibility, assistive technology, its aims and innovations, the cutting edge research in the area and Arabic language specific technologies.

UNICEF : Outlining the actions taken, Kallander said that UNICEF has been supporting ministries of health and other government agencies to adopt digital solutions to especially improve the reach of health services, especially primary healthcare services, to children and their families, the vulnerable and marginalized.

Kallander spoke about UNICEF’s firsthand experience in how digital tools have enabled community health workers to be more efficient and effective, reaching more children and families with life saving support and information. According to her, digital platform can offer adolescents spaces that help them make informed decisions about their physical and mental health and well being.

Speaking of UNICEF’s focus, Kallander further said there was need to further explore specialized solutions that can improve the detection of symptoms, machine learning algorithms that can analyze behavioral data to assist in the early diagnosis of autism. All these are important for timely and tailored interventions in young children.

“But we must really tread carefully here because we really can’t afford losing the basic privacy rights and decision making ability of individuals and families,” Kallander said, adding that UNICEF is actively working to address these issues and protecting children from harm in the digital age.

Pointing out vulnerability for children and adolescents on the autism spectrum to online risks such as cyber bullying, exploitation, Kallander said, “We must really ensure that these platforms are safe and secure for all these individuals,” she said. She emphasized digital literacy for parents and for the health workers to ensure that they have the necessary training and support to enhance this digital health experience for children on the autism spectrum.

Marcus Autism Center : In her address, Klin mentioned three challenges in regard to ASD: (1) time to diagnosis, (2) scarcity of expertise, and (3) the subjectivity of the process of diagnosis and treatment.

The need is to identify, diagnose and intervene early, Klin stressed, noting that in the United States, only one in five is diagnosed before the age of three. The vast majority of children who are diagnosed later, making treatments more expensive and outcomes more poor.

Speaking of the disparity in accessing, Klin said high quality diagnosis requiring expert clinicians who have had extensive training, who can complete extensive evaluations using standardized instrumentation that may take six to 10 hours. This is a costly process and is not accessible to the vast majority of families, she said.

To address this, Klin suggested leveraging science with advanced understanding of early social and social behavioral development. In this context, Klin gave example of the eye tracking methodology tool that accomplishes in 12 minutes, what expert clinicians will take six to 10 hours to complete. The tool involves a child watching videotapes of other children interacting, it is administered through a tablet that can work anywhere there is internet connectivity. 10 To 15 minutes later, a clinical report is issued with a diagnosis for the child as well as with quantitative information about the child’s level of social disability, verbal ability and nonverbal ability.

“It is only the beginning of the road for those who want to bring this tool to those who need it, where they are and when they need it,” Klin said.