Category Archives: Conferences

Autism & Severe Problem Behavior: What Do We Do?

Some children on the spectrum experience very severe problem behavior, that includes causing themselves great physical harm or causing others harm, which poses a real challenge to parents, doctors, and educators alike when it comes to treatment.  Earlier this month a California couple was accused of keeping their 11-year-old autistic son in a cage, which elicited a lot of criticism and debate over how to best take care of those children who unfortunately engage in this behavior. Amy Lutz, the author of Each Day I Like It Better: Autism, ECT, and the Treatment of Our Most Impaired Children, and a mother of a severely autistic son, talks about how people are quick to judge when it comes to taking care of your child. Her son’s aggressive behaviors were so dangerous that he has to spend ten months at the Kennedy Krieger Institute at just nine years old. Without knowing the details and context for these parents accused of caging their own child, we can’t really say whether this was a form of abuse or maybe a short-term solution to a very difficult challenge.

Dr. Gregory Hanley, Professor of Psychology at the Western New England University and adjunct Professor of Psychiatry at the University of Massachusetts Medical School, gave a dynamic and informative workshop about how to assess and treat severe problem behavior for children with ASD at ICare4Autism’s International Autism Conference. He talked a lot about using effective and safe methods as a behavioral analyst to not only help children on the spectrum, but also making sure to treat them as an individual with dignity and respect. Much of the problem behavior that he used as examples throughout the workshop included children who would throw tantrums, or engage in self-harming behaviors, and even trying to physically harm others.

The method he described to work through these behaviors is called functional assessment. He then provided a few qualifications and adjustments to the way behavioral analysts used to and still do functional assessments. Many behavioral analysts can be afraid for their safety or the child’s especially if the case is one of producing physical injury. Dr. Hanley argues that with the right method and approach, the analyst can provide a safe environment that allows them to learn essentially what it is that causes the problem behavior. Functional assessments like the ones that Dr. Hanley described are just ways in which behavior can be treated, however, there are other cases where the problem behavior is in fact a mental issue that requires medical treatment. The medicine available today includes anti-depressants, anti-seizure drugs, or in extreme cases electroconvulsive therapy. 

We hope that as this field of research continues to grow, we can come to a better understanding about the individual and how to help them lead more successful lives. To see Dr. Hanley’s presentation slides used during his workshop, click HERE.



Study Supports Personalized Interventions & Tablet Use

Researchers at UCLA found that children with autism who face bigger challenges when it comes to speaking and communicating can actually develop those skills through personalized interventions and the use of tablets and apps. The study spanned over three years and looked at 61 children on the spectrum ages 5 to 8.  About 30 percent of children on the spectrum do remain non-verbal or minimally verbal even after years of intervention.

For the study, each child received communication therapy that focused specifically on social communication gestures as well as play skills and verbal communication, for six months. Then half of the children were randomly selected to use speech-generating apps for the majority of their session time. Therapists would work on communication therapy with the child and also use the apps where, for example, a child could tap a picture and the audio of the name of the picture would play. They found that using the apps during therapy was more effective that communication intervention alone. Children who had access to the tablets and learning apps were more likely to use language spontaneously and socially. 

Connie Kasari, professor of human development and psychology at the UCLA Grad School of Education and professor of psychiatry at UCLA’s Semel Institute for Neuroscience and Human Behavior and senior author of the study, says “It was remarkable how well the tablet worked in providing access to communication for these children. Children who received the behavioral intervention along with the tablet to support their communication attempts made such faster progress in learning to communicate, and especially in using spoken language.”

The researcher also followed up with the children three months after the initial study and found that their improvements were consistent during that time. This was the first study that used multiple assessments and catered the interventions to according how each child responded.

This past ICare4Autism International Autism Conference highlighted ways in which technology could be beneficial for those on the spectrum. To see the slides for some of the speakers, click HERE.



New Program Helps Autistic Students Gain Work Skills

(Al Hartmann | The Salt Lake Tribune) Christopher Charles, left, and Steven Sargetakis work on computers with SketchUp Make, a 3D modeling program.

The University of Utah and Columbus Community Center are testing a pilot program that hopes to help people on the autism spectrum gain work skills and become an important part of the workforce. The program was started by NeuroVersity, a company whose aim is to give students the appropriate training and skills that can translate towards productive careers. Ten high school students were selected by their high schools to take part in the program.

SketchUp Make is a 3D imaging software that was developed by Google and is used in construction, architecture, urban planning, and video game designing companies. Natalie Gochnour, associate dean for the University of Utah’s David Eccles School of Business, says, “In economics, we’re always looking for investment and productivity. That’s when we grow. People with disabilities bring a very unique skill set, very valuable skills.”

For sixteen-year-old Mason Dimock, who is able to focus in on one subject, is a visual and spacial thinker, and is interested in technology, the program is something that he seems to actually enjoy. “I think it’s a great program. It not only helps you with SketchUp, but it helps with social skills too[The software] is good for architecture. You can make pretty good money; they use it for construction.”

In the first week of the program, the students were able to design their own creations, which included trucks, tanks, dragon worlds, 260-house neighborhoods, and raceways. The organizers from Big-D Construction told the boys, “If you want to come back next week, you’ll be able to work on a real project and get paid.” All ten boys showed up the following Monday ready to get to work. Mike Plaudis who works for Big-D Construction and also has a son with autism, trained the students on the basics of design building, including converting a 2-D drawing of a building to a three-dimensional blueprint. 

Mason’s mother, Denise Dimock says, “The entire experience has been magical. It’s empowered him.” She explains that being around kids who have the same interests as him has allowed Mason to gain confidence about his talent and work. He has even presented his project to an audience of about 15 people. 

ICare4Autism’s past conference addressed their own goals to drive global workforce initiatives as well as other local initiatives being taken by other companies such as Walgreens, Freddie Mac, and Specialisterne.  The conference speakers highlighted ways in which we can change our thinking in order to address the growing need for jobs for the autistic community and also how students on the spectrum are willing and able with a variety of skill sets to bring to the table. This pilot program with NeuroVersity is a great example of how these efforts really make a difference in the lives of those living on the spectrum.



Using Technology as a Tool for Skill Development

Dr. Dana Reinecke Presenting at 2014 ICare4Autism Conference

Dr. Dana Reinecke gave a presentation at the 2014 International Autism Conference titled, “Technology Opens Doors for Students of All Ages on the Spectrum” where she discussed the best ways to use different aspects of technology to help those on the spectrum. She also discussed the reasons and situations where technology might not be so helpful and even so far as detrimental to a child’s development. For example, if the technology you are using does not actually meet a particular need that you may trying to address, if it becomes more of a distraction than it is helpful, and if it is too expensive and time consuming, then using technology may not be the best choice in your situation.
Another important point she was about using technology as a replacement for social interaction or as a babysitter for your child. Using technology too much and to the extent where it is being used in place of any other types of exercises can be counteractive towards the progress you are trying to make with your child or student.
​Young adults need to have social skills in today’s world to be able to ​maintain a job make personal decisions that are helpful and beneficial for their lives. Individuals need to be able to negotiate with others in order to have their needs met, which can be an especially difficult thing for people on the spectrum as many of them process the environment differently than we do.
​She also stressed the increase of autism diagnoses and rising need for different kinds of treatment and therapies to help people on the spectrum lead productive and fulfilling lives. Dealing with the stresses of daily life, the working life, the young adulthood life can be overwhelming for people who are not on the spectrum, and for people who are these could be disabling for them as they need certain skills in order to thrive in today’s social and tech savvy society. ​
Teachers, parents, and therapists all listened in to learn ways in which they could use technology to further their goals in teaching students on the spectrum different skills. She made sure to provide examples of sources as well as her own program design that people can create themselves to focus on specific needs. Overall, Dr. Reinecke was able to convey alot of useful tools for the audience.


Making Global Connections at Shema Kolainu

Dilara Mitu discussing how to help poverty stricken children with disabilities in Bangladesh with Dr. Joshua Weinstein, CEO & Founder of Shema Kolainu & ICare4Autism

Today Dilara Mitu, Managing Trustee and Director of the SEID Trust took the time to visit Shema Kolainu in the hopes of starting a collaborative relationship and learn some best practices used at the center. The SEID Trust is an NGO in Bangladesh that is a voluntary development organization working towards promoting the rights of underprivileged children with disabilities, especially those with ASD. It specifically serves poverty stricken children within the community who need the resources the most; they do this through their own fundraising efforts, as they are not publicly funded.

Ms. Mitu met with Dr. Weinstein, CEO & Founder of Shema Kolainu and ICare4Autism, to discuss ways in which she could help the children and the larger community that she serves. After attending the 2014 International ICare4Autism Conference this past June 30th thru July 2nd, she says that she was able to learn a lot. When she heard about the conference there was no doubt in her mind that it would be worthwhile. She says the expenses that she paid to make the trip was nothing compared to the insights and knowledge that she gained from the 3 days. She especially enjoyed the presentations by Anat Baniel and Martha Herbert who gave her different perspectives in which to learn about ASD and best practices.

Ms. Mitu has a strong belief in simply having faith in children and promoting their abilities so that they can be productive members of society similar to Shema Kolainu and ICare4Autism’s goals. Dr. Weinstein was enthusiastic to learn about her organization’s commitment to giving autistic children a voice of their own and also listened to many of the challenges they faced in doing so.

After having an constructive discussion, she was then given a tour of the center so that she could see for herself the practices they had discussed. Overall we are excited to have another organization reach out and are more than happy to share resources. ICare4Autism is dedicated to its mission of collaborating on an international level so that people on the spectrum are able to live more fruitful and happy lives. We thank Ms. Mitu for her visit and will be keeping in touch!



Emma Zurcher-Long Inspires at ICare4Autism Conference

Ariane Zurcher & Emma Zurcher-Long at ICare4Autism Conference

Ariane Zurcher, popular blogger and writer for the Huffington Post, along with her daughter Emma Zurcher-Long sat down to have a very intimate talk with the audience on Wednesday for Day 3 of the ICare4Autism International Autism Conference. Their presentation titled, My Body Does Not Obey My Mind, was actually Emma’s idea. She shared with the audience, through typing on her iPad the personal struggles she faces as a person on the spectrum. Ariane Zurcher explains how at first, her and her husband didn’t really understand Emma and her ability to express herself. All they were able to see was her childlike appearance accompanied by silly faces and uncoordinated movements. Whenever they would talk about Emma in front of her they never knew that she actually understood everything they were saying about her and was actually quite hurt from what she heard.

To demonstrate this concept to the audience, Emma would make some silly faces, including one of her favorites, which is doing “fish lips”. She types, “Doing fish lips to the audience is an expression of funny playfulness, but can be misinterpreted as simple-mindedness. Silliness is acceptable in those who are believed smart, but for those like me, it indicates stupidity.” When people come across an autistic child doing silly things or perhaps engaging in a calming activity such as stimming etc., they are quick to judge and perceive the child as slow or stupid, when in fact they just don’t have control over their bodies the way other children do and are able to understand situations and conversations as much as the next person.

Emma types, “In my mind, I am graceful and move like a dancer and speak with a passion and the articulation of an acting coach.” When it comes to autistic children there is always more that meets the eye. They have complex webs of thought and emotions that sometimes get expressed in a way that we don’t understand. Emma really opened a lot of eyes with her presentation and shed some much needed light on the thoughts and feelings of an autistic child. Hopefully many people left with new and inspired ideas of what it means to have an autistic child and how to perceive their actions, maybe not as stupidity but rather just a different form of complex expressions.

To read Ariane & Emma’s Blog, click HERE

 



Collaboration Creates Positive Change for Children With ASD

A group of students and engineers at Kansas State University are collaborating with NGOs to develop technology that will improve the health and quality of life for children with severe developmental disabilities. Heartspring Inc. provides therapeutic and residential day programs to serve students who tend to have more than one developmental disability, including mostly, ASD, cerebral palsy, and speech and language impairments.

After receiving a five-year grant from the National Science Foundation’s General and Age-Related Disabilities Engineering program, the professors at KSU are teaching senior design courses where engineering students work towards developing devices and software that will help children at Heartspring, who have a primary diagnosis of autism and the majority are nonverbal.

Steve Warren, associate professor of electrical and computer engineering,  says “The intent of this program is to pursue a specific design for a specific child when possible. When we are finished with a design, that individual would then get to keep and use a copy of the design. This is research where you can add immediate benefit to these children’s lives.”

During the 2013-1014 academic school year a design team of about 30 professors and students worked on how to develop tools to address the needs of these children. “It’s often the students’ first exposure to an open-ended design problem,” says Punit Prakash, another assistant professor of electrical and computer engineering that is leading the team. “They identify a specific problem and propose how they can address that. It’s a real-world problem, similar to the kind they will work on throughout their professional careers.”

So far some of the projects that students have completed include:

  • Smartphone tools and apps to help educators track and record children’s behavioral, physiological and cognitive development.
  • Wearable sensors that can be placed in shoes or clothing to monitor self-abusive behaviors.
  • Musical toothbrushes that tracks brushing activity and plays a song so children know how long to brush different areas of their mouth.
  • Multi-touch surface computer games that teach children how to sort items
  • Mattress & Bed sensors that track breathing and heart rates while children are sleeping

The students occasionally get to tour Heartspring so that they can better understand the environment and the designs that are needed there. “All too often clinicians and teachers don’t know what is possible and engineers don’t know what is needed. When the two come together, there is an opportunity to encourage interdisciplinary collaboration and to imagine new solutions to real-world problems,” says Gary Singleton, president and CEO of Heartspring. 

More collaboration like this should happen in order to create positive change and a variety of resources for students with special needs. There are so many ways that technology can facilitate learning and help students with developmental disabilities reach their highest potential. 

ICare4Autism and Shema Kolainu work towards these same goals. At our upcoming International Autism Conference many families will be attending to meet some of the people behind the apps and devices that they can use to help their child, especially on Day 2 where the focus will be on technology. For more information and registration, CLICK HERE!

 



Visual Speech App Could Help With Communication

Keene State College professor Dr. Lawrence Welkowitz and his app to aid people with autism. (Keene Sentinel - Michael Moore)

People with autism tend to have a hard time communicating since many of them have a hard time expressing emotion as well as interpreting emotions making having a conversation very difficult.

Psychology professor of Keen State College, Lawrence Welkowitz, conducts research that aims to help people on the autism spectrum understand and imitate the subtle patterns in speech. He is now working on an iPad app that shows a person’s speech represented in sound waves. This visual representation would help people to see and match how emotions are conveyed in their speech.

Professor Welkowitz is working with neurologists  at Dartmouth’s Geisel School of Medicine to conduct studies testing this new app idea. The study involves having  high-functioning adults on the spectrum use the app while researchers measure their brain activity on an MRI scan. The tests are meant to show whether or not someone on the autism spectrum is able to learn new speech patterns through this method. Though researchers have said that results were promising so far, but there is still a lot of work to be done.

Welkowitz’s former research assistant at Keene State, Josh Green says “visuals are good for autistic people who tend to be more literal, concrete, visual.” As a grad student at the University of Connecticut, Green is currently doing his own research on speech development and autism. He and Welkowitz originally designed the app with the help of Museami, a digital company, naming the app SpeechMatch.

A person on the spectrum can use the app to listen and see the sound waves of their speech for a variety of phrases being said with different emotions or tones. They then try to match their own voice and tone to the phrases and can see if the sound waves line-up. The app calculates a numerical score to tell the person how close or far they are from matching the sound waves of the original phrase.

Dr. Robert Roth, professor of psychology and part of the Dartmouth team, says “When they’re processing language [there’s] quite a lot of activation in the left brain areas,” which control more concrete thinking. What they’re really looking for is activation in the amygdala, which the emotional control center in the brain. This app could prove to very beneficial to people with ASD in the future, however a lot more research and funding is needed before an official app is released.

The third day of ICare4Autism’s International Autism Conference on July 2nd will be completely focused on new technological developments and ways that technology is opening doors for people on the spectrum. To find out more and register for the conference, CLICK HERE



Learning Digital Skills

Dr. David Mandell, director at the Center for Mental Health Policy & Services research, says “If our expectation is that people with autism will have opportunities available to them to fully participate in communities to be gainfully employed and to have meaningful life experiences, then teaching digital literacy is going to be a big part of that. 

Autism expressed is an interactive learning platform that teaches students on the spectrum a variety of digital skills. Technology and the digital world is an important tool for learning in and out of the classroom and also provides a variety of resources that most people access on a daily basis. The program “autism expressed” combines real world applications that help build skills necessary to use the internet independently. 

Autism Expressed was originally created by special education teacher, Michele McKeone, to help her students develop digital skills that she wasn’t able to teach them in her public high school classroom. “By teaching her students marketable, digital life skills she was able to increase her students transition outcomes and post-secondary opportunities including college and vocational participation. 

A unique aspect of her program is that it is specially designed to accommodate each child’s needs, so “high functioning” kids on the spectrum are not the only ones able to use to program.  Using ABA therapy as a foundation for the curriculum, users work at their own pace and practice as many times as they like until they master the skills and concepts. Safety is something that is also stressed in the program–teaching students to be aware of spam or “phishing,” cyber bullying, and distinguishing between what should be public information and what should be private. 

The ultimate goal for Autism Expressed is to essentially level the playing field for people on the spectrum and give them the skills and resources they need to be competitive and productive in their post-secondary endeavors. Not only that, but kids finish with a sense of empowerment and autonomy, leaving them motivated to pursue their goals. 

Michele McKeone will be at ICare4Autism’s International Autism conference on Day 1 and Day 3 to speak about her program and the resources that it can offer. To come hear her speak yourself, click here! 

To visit the Autism Expressed website, click here



Supreme Court Moves Away from ‘Mental Retardation’ Terminology

Recently the Supreme Court struck down Florida’s strict IQ cutoff for determining a convict’s eligibility for the death penalty. In this 5-4 ruling, the court decided that their cut off of 70 “disregards established medical practice” and creates “unacceptable risk” that a convicted person with an intellectual disability might be executed in violation of the constitution. They proposed that Florida follows other states’ examples by taking other factors into account apart from IQ in order to test for intellectual disability.

The case ruling also marked a milestone in the efforts to put an end to the use of the term “mental retardation” as the court, for the first time ever, used the term intellectual disability in its decision. Back in 2010, Obama signed what was called Rosa’s law, which requires that the federal government replace the term “mental retardation” with “intellectual disability especially in federal health, education, and labor policy. However, changing terminology in the political arena is a slow process. The Supreme Court’s decision to acknowledge the new terminology marks one of the last few major national institutions to adopt this “new language.”

“Getting the name change in the eyes of the court is kind of the last step in a 25 year process to affirm the dignity of people with intellectual disability,” says Peter Berns, CEO of The Arc, a grassroots organization that has been lobbying for this change along with many other advocacy groups.

Now that the Supreme Court has really clarified its stance on intellectual disability, perhaps we can really start making a move away from the outdated “mental retardation” which carries a heavier and much more negative connotation about those with disabilities. Changing the way we label someone can really influence the way we approach them as people as well as approach the obstacles that they face. The Court’s decision serves as an uplifting milestone in the disability community, especially for people with autism. 

Advocacy groups and self-advocates play an important role in the lives of those within the autism community. Self advocates, Stephen Shore and Ari Ne’eman are great public speakers, despite being on the spectrum themselves, who will be presenting with self-advocacy at our upcoming International Autism Conference. Click here for more info!