[Note: Shared for #AutisticHistory archive purposes. This is NOT An Autistic Ally.]
Technology to Build Bridges
Second Annual Conference Held at Oracle
By Donald Ham
“What makes you happy?” an audience member asked 12-year-old Rajarshi “Tito” Mukhopadhyay, a severely autistic, highly gifted boy from India in the opening session of CAN’s second annual Innovative Technology in Autism Conference. With hands flapping but no hesitation, Tito answered by rapidly spelling out words on an alphabet board: “A dream happening. Like this moment.” Reflecting on this profound moment later in the day, CAN co-founder Jonathan Shestack confirmed the importance of realizing that autism’s outer manifestations might not always reflect what’s going on inside a person. “One of the things CAN and this conference is about,” he said, “is building bridges from the inside to the outside.” The daylong conference held at the Oracle Headquarters in Redwood Shores, California on October 20th, 2000 presented an impressive array of technologies and research to assist autistic children and their caregivers in doing just that.
The Conference theme “Recent Developments and Works in Progress” was explored and presented in dual fashion. In the main conference room, an impressive roster of prominent scientists from across the country presented research to support a variety of new technologies. Across the hall in a hands-on exhibit room, conference attendees could view, ask questions and experience many of the latest technologies. Yvonne Lewis came to the Conference from Santa Rosa, California to find out what she could do to assist her 47-year-old brother who was placed in a care facility 30 years ago. “Back then he was thought to have profound mental retardation, and finally we’ve gotten autism as part of his diagnosis,” she said. “What I’m seeing today is very exciting and it gives me hope for my brother, because I’m sure he has capabilities that can be brought to the surface.”
The morning session of the conference focused on Tools in Use. Dominic Massaro, Professor of Psychology and Director of the Perceptual Science Laboratory at the University of California, Santa Cruz, presented research to support the use of computer animated talking heads for the language tutoring of children with autism. He introduced “Baldi” a talking head developed as a research tool that has proved to be useful as a language tutor for children with hearing problems. Dr. Massaro showed how visual information coming from a live or animated face affects how we perceive sounds, and how pattern recognition like the movement of lips to form words, affects how we perceive the accompanying sounds. Across in the exhibit room, Alexis Bosseler demonstrated how she is actually using Baldi in two San Francisco area schools with special day programs for autism. “Most of the children really like Baldi,” she said, “and we’ve seen a measurable increase in word identification just based on these programs.” Baldi can also be used in the home by downloading the speech toolkit free of charge at http//mambo.ucsc.edu
In a related presentation later in the day, Dr. Marco Iacoboni, Assistant Professor of Psychiatry and Behavioral Sciences at the University of California, Los Angeles, School of Medicine explored the role of imitation in learning. His presentation provided a valuable supplement to the earlier Baldi demonstration by Dr. Massaro. Researchers have identified the areas of the brain that involve mirror activity affecting learning. For example, Broca’s area (in the brain) is related to mouth movements and symbols. “In autistics,” said Dr. Iacoboni, “there is a deficit in imitation. But although autistics appear not to imitate spontaneously, a certain ability is there and can be elicited by appropriate structural interactions.” One of his major points made in summary was that mirror properties are not innate, but are experience related.
Dr. Stephen Porges of the Institute of Child Study at the University of Maryland’s Department of Human Development, explained how he developed the Listening Project. Using video clips to illustrate, Dr. Porges presented a biologically based intervention that can stimulate social behavior and communication in children diagnosed with autism. He first showed research on how looking and listening are connected in the brain and how this function is often limited in autistic children. “But what if we modulated physiological states to affect behaviors?” he asked, proceeding to show examples of the theory in practice. Children with autism were exposed to five sessions of 45 minutes length, in which acoustic stimulation (human voices and children’s songs providing a variety of frequency band experiences) was provided via headphones. Video clips clearly showed the children’s increased engagement, facial expression and eye contact both during and after the interventions. Dr. Porges emphasized that the Listening Project is not a cure, but a system of stimulation which increases engagement in autistic children.
In the afternoon, Dr. Michael Merzenich, the Frances A. Sooy Professor at the Keck Center for Integrative Neurosciences at the University of California, San Francisco, explained connections between models of the origin of language learning impairments and autism. Research conducted by Dr. Merzenich’s lab led to the development of Fast ForWord, a computer-based learning tool that can remediate symptoms in language delayed children. Fast ForWord exhibited a variety of available computer programs to help students of all ages. The programs build language and reading skills via individualized training that can be adapted to each student’s progress on a daily basis. Conference participant Deirtdre Ryan of the Spectrum Center, Berkeley, develops behavioral interventions for children with challenging behaviors, many of which are in the autistic spectrum. For details on Fast ForWord, call 888-665-9707 or log onto http://www.ScientificLearning.com
The Hope Technology Group is a non-profit technology group, which has established a computer-learning lab, and now aims to build schools using technology in the classroom to assist children with learning disabilities. Speaking about the group and their exhibit at the CAN conference, spokesperson Darren Holland explained, “We look for technologies we can adapt by modifying the hardware and software for programming, and writing language to help special needs children use technology to be able to learn.” Working with the Hope Technology Group, occupational therapist Kristina Walker spoke from her experience teaching Jordan, a child who was originally unable to sit down or focus for more than three minutes. “He really responded to the computer,” she said. “Although he was initially unable to understand how the mouse worked, he could touch things with his finger. So we were able to use a computer modality to help him connect letters with sounds. Our philosophy is to use whatever works for the kids and customize it to their needs. So by mastering the cause and effect principle this way, Jordan was able to move into using the mouse. It’s been wonderful to see his progression. I think it’s important for parents to be open to using a whole range of tools beginning with where their children are, and then challenging them to move to where the child can grow.” For more information call Hope Technology Group at 650-259-0566.
Liisa and Al Neumann of Gambrills, Maryland provided one of the simplest and most practical innovative technologies on display. Their demonstration of “Video Modeling” which they developed for teaching their own autistic child, attracted a large number of interested parents and teachers. Using their home video camera, Liisa and Al make brief instructional videos for eight-year-old William, using family members to model the skills he is learning. “We videotape in an environment he knows and with people he’s comfortable with,” said Liisa, “then we follow each segment up with what we call a reinforcer video as a reward-something we know he really wants to see. In his case it’s video of the model trains which he loves.” Liisa and Al have found that if William watches a video model somewhere between five and ten times, he masters the skill. They add with obvious enthusiasm, “Anyone with a home video camera can do this, either in the home or at schools. It’s an inexpensive alternative or adjunct tool to some of the more costly programs. As a parent frustrated by not being able to teach my autistic child who couldn’t pay attention, I found this is a great way to do it.” Liisa Neumann has also written a book on this subject: A Visual Teaching Method for Children with Autism. More information is available at their website: http://www.ideasaboutautism.com
Finally, two researchers presented a work in progress. Dr. William Hirstein, Director of the Cognitive Science Lab at Elmhurst College, Illinois, showed how Skin Conductance Response (SCR) in autistic children has no base line-instead moving through dramatic highs and lows. He suggested that hand flapping and body swaying are ways of calming down and self-regulating for autistics, their way of finding a “normal window.” Other ways of accomplishing this have been placing the hand in dry beans, sucking candy-or squeezing oneself. Carlos Elguero of the University of Massachusetts, Amherst, then presented the “Squeezevest,” a device in progress that can be worn by autistic children to regulate SCR. Based on the principle that firm touch and squeezing from the sides appears to have a calming effect on autistic children, the Squeezevest provides automatic activation in a non invasive manner, is portable and will have a relatively low cost. The design is being refined for further testing and evaluation.
The impact of the conference was most obvious from participant comments. “What brought me here was Kevin, my eight-year-old autistic godson who I work with at school and in the community,” said Andrea Merg of Mountain View, California. “I’m very interested in the demonstrations I’ve seen here today, particularly the home videotaping to teach basic skills. I think we’re going to try that with Kevin.” Kevin’s mother, Denise Lochtefeld was also present. As a parent with twin boys who have participated in CAN’s Autism Genetic Resource Exchange, Denise claimed, “We always say ‘if we could do anything.’ Today has provided us ways to do something. It gives me hope that there are so many people interested in autism-both in searching for a cure, and in finding things to help us now. Five years ago, when we started this journey, there wasn’t much out there-other than hopelessness.”
The conference’s final session brought all the day’s speakers together for a dialogue with the audience. This showed the broad range of impressive work being done in technology for treating autism, as well as the challenges that remain. Several questions elicited speaker responses like “We really don’t know yet” or “My answer has to be a hypothesis” or “I need to go back and do further research on that.” One questioner challenged the panel with “How much of your research is being shared, and how much is duplicated? And how much of your work is being carried out with real families dealing with autism now?” In response, moderator and CAN co-founder Portia Iversen pointed out that until a few years ago most of the scientists on stage would not have been sharing information in the kind of forum the day had provided. She confirmed the pioneering work of CAN in bringing a systematic approach to the study of autism-both towards an early cure and innovative technologies for treating autism now.
Beyond the world of what and why
Beyond reason and the concrete
The “Absolute” lies with a richer glory
Somewhere in imaginations deep
-Rajarshi “Tito” Mukhopadhyay
More With Cure Autism Now
Autistic people have fought the inclusion of ABA in therapy for us since before Autism Speaks, and other non-Autistic-led autism organizations, started lobbying legislation to get it covered by insurances and Medicaid.
ABA is a myth originally sold to parents that it would keep their Autistic child out of an institution. Today, parents are told that with early intervention therapy their child will either be less Autistic or no longer Autistic by elementary school, and can be mainstreamed in typical education classes. ABA is very expensive to pay out of pocket. Essentially, Autism Speaks has justified the big price tag up front will offset the overall burden on resources for an Autistic’s lifetime. The recommendation for this therapy is 40 hours a week for children and toddlers.
The original study that showed the success rate of ABA to be at 50% has never been replicated. In fact, the study of ABA by United States Department of Defense was denounced as a failure. Not just once, but multiple times. Simply stated: ABA doesn’t work. In study after repeated study: ABA (conversion therapy) doesn’t work.
What more recent studies do show: Autistics who experienced ABA therapy are at high risk to develop PTSD and other lifelong trauma-related conditions. Historically, the autism organizations promoting ABA as a cure or solution have silenced Autistic advocates’ opposition. ABA is also known as gay conversion therapy.
The ‘cure’ for Autistics not born yet is the prevention of birth.
The ‘cure’ is a choice to terminate a pregnancy based on ‘autism risk.’ The cure is abortion. This is the same ‘cure’ society has for Down Syndrome.
This is eugenics 2021. Instead of killing Autistics and disabled children in gas chambers or ‘mercy killings’ like in Aktion T4, it’ll happen at the doctor’s office, quietly, one Autistic baby at a time. Different approaches yes, but still eugenics and the extinction of an entire minority group of people.
Fact: You can’t cure Autistics from being Autistic.
Fact: You can’t recover an Autistic from being Autistic.
Fact: You can groom an Autistic to mask and hide their traits. Somewhat. … however, this comes at the expense of the Autistic child, promotes Autistic Burnout (this should not be confused with typical burnout, Autistic Burnout can kill Autistics), and places the Autistic child at high risk for PTSD and other lifelong trauma-related conditions.
[Note: Autism is NOT a disease, but a neurodevelopmental difference and disability.]
Fact: Vaccines Do Not Cause Autism.