Category Archives: Early Intervention

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.



Summertime Safety

Keeping an eye on your child can be a challenging task especially now that summer is here and kids want to play outside or go to parks and beaches with their families. This task can be especially challenging for families with autistic children. And water safety concerns are also particularly heightened for families of children with autism, says Varleisha Gibbs, OTD, OTR/L, occupational therapy professor at University of the Sciences in Philadelphia.

“Although water safety is a concern for all parents, children with autism are especially at a higher risk fordrowning because they may seek isolation by fleeing to unfamiliar territories,” says Dr. Gibbs. Drowning actually accounted for approximately 90 percent of the total U.S. deaths reported in children with autism ages 14 and younger, according to statistics from the National Autism Society. Research shows that about 50% of children with autism tend to flee or escape a safe environment and put themselves in dangerous situations. Dr. Gibbs outlines some tips for families during this hot summer:

  • Learn to swim: enroll your child in swimming or water safety classes as soon as possible
  • Visual learning: Use videos and images to talk to your child about water safety
  • Display reminders: if your child responds well to visual cues, consider posting signs on doors that lead to outside such as STOP or DO NOT ENTER, or even a hand signaling “stop”
  • Key information: Make sure your child knows his or her name, address, and phone number in case of an emergency. If they are nonverbal, they should wear a bracelet or have theiridentification information on them at all times.
  • Avoid sensory-overload: Try to prepare your child ahead of time for what they can expect as they enter a new environment such as a beach or theme park.
  • Alert others: Communicate with your neighbors and others in your community to alert you immediately if they see children wandering by themselves. 

“Swimming and aquatic therapy is actually a wonderful sport for children with autism because it can address many of their body’s sensory and motor needs. By preparing and communicating with your child with autism, family, and friends, summer trips and activities can be much less stressful and more enjoyable,” says Dr. Gibbs.



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.


Pesticides & Links to Autism

A new research study aimed to determine whether living close by to an area where agricultural pesticides are used have an influence on developing autism. The study used 970 children born in farm-rich areas of Northern California to test this theory. 

The study found that the babies of moms who live within a mile of crops treated with widely used pesticides were more likely to develop autism by 60% when compared to children whose mothers do not live close to treated fields. This risk was greatest during their second and third trimesters.

Though the study does not show that pesticides themselves are a cause for autism, it does show that any exposure to farming chemicals during pregnancy could have negative and lasting effects for your child. This is actually the largest project to date that has attempted to explore the links between autism and environmental exposures.

Irva Hertz-Picciotto of the University of California, Davis MIND Institute, who worked on the study explains, “what we saw were several classes of pesticides more commonly applied near the residences of mothers whose children developed autism or had delayed cognitive or other skills.” For example, kids born to mothers exposed to organophosphates were 60% more likely to have autism. Pyrethroids were also linked to an increase risk in autism and carbamates were linked to developmental delays. 

Many of the mothers lived next to fields that were treated with several different pesticides throughout their pregnancies so separating the potential risks of each chemical was a challenge that scientists are still working on. Apart from this, researchers want to look at how environmental exposures affect people with different genetic make-up in different ways. Janie Shelton, epidemiologist and lead study author says, “We need to know if some moms are at a higher risk than others and what that risk is. Knowing who is most vulnerable is key to understanding how to better protect them.”

The ICare4Autism International Autism Conference will feature presentations from top medical professionals in the Autism field, including a presentation on “Detecting Risk for ASD in the first year of life” by Celine Saulnier, Clinical Director for Research at the Marcus Autism Center and Assistant Professor in the Division of Autism and Related Disorders at the Emory University School of Medicine. To see her presentation as well as many others, click here for tickets!



Century Old Drug Provides Promising Furture In Autism Treatment

A new study conducted by researchers at the University of California, San Diego (UCSD) School of Medicine was recently published in Translational Psychiatry. Researchers found that a century old therapy originally meant to treat sleeping sickness may actually be used to reverse autism symptoms. The drug appeared to restore normal cellular signaling in a mouse model of autism by reversing the symptoms of autism in animals that were the human biological age of 30 years old.

Dr. Robert K. Naviaux, co-director of the Mitochondrial and Metabolic Disease Center at UC San Diego explains, “Cells behave like countries at war. When a threat begins, they harden their borders. They don’t trust their neighbors. But without constant communication with the outside, cells begin to function differently. In the case of neurons, it might be making fewer or too many connections. One way to look at this related to autism is this: When cells stop talking to each other, children stop talking.”

The mice groups used in the study are engineered to exhibit symptoms of autism spectrum disorder and so the researchers gave them the drug suramin, which was created in 1916 to treat African sleeping sickness, hoping that it would block the signal pathway that would stimulate the “cell danger response.” They found that the drug did work to this end and the cells and metabolism in the mice actually began behaving normally. Though this trial was successful, the drug is not permanent or preventative as a single dosage was only effective for about 5 weeks. Also long the drug cannot be used for long term since it can have serious side effects of anemia and adrenal gland dysfunction.

However the study was promising in that they were able to create normal cell behavior in the mice. Later this year they will be conducting a clinical trial that will assess the treatment using children with ASD.

Dr Naviaux suggests that “the treatment, rather than being used as an autism ‘cure,’ may be used effectively to complement non-drug behavioral and developmental therapies.” He says that this new drug provides a new perspective on the way we thing and address the challenges of autism. 

ICare4Autism’s International Autism Conference, less than two weeks away, will be talking about new drug developments and biomedical perspectives on Day 2 of the conference. Martha Herbert, director of the TRANSCEND research program and pediatric neurologist at Mass General Hospital,  will be giving a presentation called “Taking a Fresh Look at Autism: Chronic Dynamic State—Not Fixed Trait.” To see her presentation and others, 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



Can Solitary Mammals Help Us Learn About Autism?

There is still so much that we do not know about autism spectrum disorder—from why it has increased in prevalence in the past decade to how to treat those who are affected.  Autism is defined as, “a neural disorder characterized by poor social interaction, problems in verbal and non-verbal communication, and restrictive, repetitive behavior.” Using these common characteristics seen in people on the spectrum, researchers are now looking into studying solitary mammals as a means to better understand the disorder. 

A recently published article in the Journal of Comparative Psychology argues that certain mammals exhibit similar behavior to that typically seen from people with autism. Some of these mammals include polar bears, opossums, skunks, tigers, cougars, and orangutans. Though many of them do have some social behavior they tend to function more independently. According to researcher Jared Edward Reser, both people on the spectrum and solitary mammals have a smaller need for attachment and bonding behaviors, lower stress from separation, and less expressiveness. Biologically the two groups are also similar in that they both produce lower level of oxytocin and vasopressin, which are two hormones that play a large role in social bonding and feelings of attachment. For example, oxytocin is released into the body during positive social interaction, which is responsible for the feelings of closeness we experience with others.

A previous study that used oxytocin injections on adults with autism had results that showed an increase in eye contact, prosocial behavior, and reduced fear/anxiety in social situations. Although much more research is still needed to determine whether oxytocin has a place in treating autism, it does have potentially promising results especially for treatment of more severe cases.

Using this comparative research can be controversial, though researchers acknowledge that only a certain autistic behaviors can be studied and explained by using these comparisons. Autism involves a variety of symptoms and no single animal model could possibly be enough to understand autistic individuals, but it can provide new insight and points for research. Reser points out that it may give us new perspectives on how we look at autistic behavior. “Are the different behaviors we label as being autistic necessarily pathological or are there advantages involved, especially in modern society?” Many scientists as well as autism advocacy groups realize that autistic people can be very successful, especially in fields such as computer programming, mathematics, and physics, therefore continuing to treat them as mentally ill can be counterproductive to our society.

Helping children with autism by providing them with therapy and specific attention to their needs has been a successful and alternative form of “treatment”. So by studying these solitary animals, perhaps we can gain insight into the biology of social interaction, “we can also recognize the need to accept that humans vary widely in terms of how they deal with others.” Dr Eric Hollander,chairman of ICare4Autism Advisory Council, professor of psychiatry and behavioral sciences at Albert Einstein and Director of the ASD Program at Montefiore Medical Center does similar research especially with studying social attachment and the biology behind social interaction as it relates to ASD. He is committed to finding best practices that will help advance the lives of children and adults who are on the spectrum. In an interview with Medscape he says, “Studying autism is really a great opportunity because if you understand what goes wrong in autism, you understand a little bit more about what makes people human. It gives you insight into issues around being able to see things from other people’s perspectives and issues around social attachment, which are really what makes us human.”

Dr. Hollander has been listed in NY Magazine and Castle Connolly’s as one of the “Best Doctors in America” and has done several interviews for the New York Times, the Today Show, and Dateline NBC. He will be giving the opening remarks at our upcoming International Autism Conference as well as presenting on Day 2, which focuses on biomedical research and new developments in autism treatments. For the opportunity to hear him speak, get more information and register for the conference HERE! 

For original article, click here



The Economic Burden of Autism

Families with an autistic child or children know all too well the financial strain of paying medical bills. According to a new study from the University of Pennsylvania and the London School of Economics and Political Science, the lifetime cost of being diagnosed with autism in the United States is anywhere between $1.43 million and $2.44 million. These costs are mostly from residential care, early intervention treatments, special education, and small chances of employment/lack of employment opportunities. The researchers included people who were over the age of 18 to acknowledge the price of a potential lifelong disability.

Over 3.5 million Americans in the U.S are estimated to have autism, according to the Center for Disease Control. And when we assume that about 40% of them are intellectually disabled, the total cost of autism in the U.S comes to about $236 billion per year. The national cost of supporting children with autism is estimated to be between $61 and $66 billion a year, for adults that cost came up to between $175 and $196 billion a year.

The largest costs for children were the special education costs and parental productivity costs, whereas the largest costs for adults on the spectrum were residential care/supportive living accommodations, and individual productivity lost. In other words, parents tend to cut back on their work hours or quit their job to care for their autistic child and then once their child reaches adulthood, they have limited earning potentials. 

According to a pair of experts from the A.J Drexel Autism Institute at Drexel University in Philadelphia we need to start thinking differently about these very large costs. Instead of there being “costs to help needy people” we should rather be focused on the issue as “investments in building stronger communities.”

Paul Shattuck, an associate professor at Drexel argues that more studies of adults and young adults with autism are needed as well as better employment practices to engage the autistic community. At the end of the day it will cost us more if decide to not care about those on the spectrum.

​For the original study, click here.

​ICare4Autism will be addressing many issues that autism families and young adults face as well as looking forward to new research and roads to opportunity. To get more information, click HERE!