Autism Parents Create Life Changing App

Birdhouse for Autism is Changing the way Caregivers Can help Children on the Spectrum

Parents with children on the spectrum are constantly looking for innovative ways to help their child develop the skills they need lead happy lives. One couple in metro Detroit has come up with an in genius idea to help parents and people in the autism community better help their children. Mother, Dani Gillman, would always take notes on her daughter’s behaviors and daily routines, including her diet, medications and vitamins, her bathroom use, doctor visits, sleeping patterns etc. She kept these notes in a well-organized binder. As parents with autistic children know, it can be difficult to assess the needs of your child. So although Mrs. Gillman had all of these notes documenting her childs behaviors, she had no way of synthesizing the information in a way that would provide some answers to how to address her daughter’s needs.

With help of her tech-savvy partner, Ben Chutz, they were able to create the idea that would become “Birdhouse for Autism.” “It’s chaotic for parents of autistic children because there’s no one-size-fits-all approach for a child with autism. It’s very individualized,” Mrs. Gillman says, “Managed care really comes down to the parents keeping everything organized. Even with doctors,, therapists, teachers and dieticians, we’re the ones trying different therapies, diets, and interventions to help our children thrive.”

The app ‘Birdhouse for Autism’ is meant to revolutionize our capacity to help children on the spectrum, by creating a digital space to store and organize a log of your children’s activities and behaviors to learn best practices to address their needs. There are currently two versions of the app, one that is free and the other that requires a monthly payment of $10. Although there has been an outburst of apps to help children with developing skills such as verbal communication, there hasn’t been a tool for parents themselves.  Even so the app can also be used by other caregivers, therapists, doctors alike. “Birdhouse is a place where all members of the care team—parent, therapist, caregiver, grandparent, or teacher—can go to in order to manage the child’s care together,” Dani Gillman explains.

To read more about their story and success click here.

To read more about the app and download a free version, click here

Shema Kolainu Raises The Voice of Autism at Legislative Breakfast

NYC Councilmember Brad Lander receives the Children Appreciation Award

Shema Kolainu – Hear Our Voices The 12th Annual Legislative Breakfast earlier today, Tuesday, July 29th, 2014 at the Renaissance Ballroom in Brooklyn, New York. Over 150 guests from across the city were at the breakfast in support of Shema Kolanu’s mission to help those on the spectrum succeed. The event welcomed a diverse group of attendees, including community leaders, civic and religious leaders, as well as elected officials.

This year, more than ever, the need to bring awareness and recognition to the autism community was critical as the statistics now show that 1 in 68 children in the population are autistic. Each year Shema Kolainu honors members of the City Council as well as the State Legislature who have shown commitment and passion for helping those in the autism community, especially when it comes to giving access to the appropriate resources for children on the spectrum.

Some of the honorees this year included, NYC Comptroller Scott Stringer, NYC COuncilmember Brad Lander, NYS Senator Simcha Felder, NYC Councilmember Mark Weprin, NYS Assembly Speaker Sheldon SIlver, NYS Assemblymember Helene Weinstein, NYS Assemblymembers Steve Cymbrowitz, Phil GOldfeder, and Dov Hikind. Also given recognition was Mrs. Leah Steinberg, Director of Project LEARN Special Education Affairs for the Agudath Israel of America, Jeff Leb, New York State Director of Political Affairs Orthodox Union, Bronx Borough President Ruben Diaz Jr., and Larry Seiler from the Bronx Network Channel for his segment Special People Special Issued (SPSI).

The honorees and distinguished guests spoke about the hard work of individuals in the legislature that have pushed for funding for resources for the autism community and more importantly the need to continue advocating on behalf of those children who need the support of therapists, teachers, parents, and community members alike. They stressed the fact that all children, whether they are on the spectrum or not, deserve access to a proper education that successfully meets their needs.

Scott Stringer, who visited Shema Kolainu earlier this year received the Appreciation Award, spoke about his admiration for the school and center and is looking forward to visiting again. NYS Senator Simcha Felder gave a special address where he emphasized the need for every citizen to be advocates and out about the needs of their communities.

Dr. Joshua Weinstein, Founder of Shema Kolainu – Hear Our Voices thanked the council members and assembly members for their unwavering support on these issues in the autism community and for their recognition of the work that Shema Kolainu does. He commended their commitment to all children and schools across the sort that are better off because of their help and advocacy.

Understanding and Preventing an Aspergers Meltdown

For those of you who are unaware, Aspergers is also called High-Functioning Autism.  Researchers say that people who have aspergers have brains that are wired differently and this “invisible syndrome” affects communication, social interaction as well as sensory issues. One of the most common events that go on in a day in the life of a child with aspergers is a meltdown.  When dealing with a problem, these children internalize everything and then eventually boil over in a rage, which then leads to a meltdown. Now, this may sound like a typical temper tantrum, but for a child and the family of that child, a temper tantrum would be a blessing compared to the gravity of the meltdowns that occur.

            A lot of the time, children with aspergers are thought to be over-receptive or under-receptive. They may be comfortable with one thing but not another, that is closely related to the first.  Many children with aspergers prefer rougher play, and have a high tolerance for pain, but become extremely uncomfortable with gentler treatment. Because of this thought-to-be hypersensitivity, parents and teachers usually end up recommending vision and hearing exams amongst other unnecessary evaluations.

            There are said to be 9 different temperaments that children with aspergers usually have. The 9 temperaments are: distractible, high intensity level, hyperactive, initial withdrawal, irregular, low sensory threshold, negative mood, negative persistent and poor adaptability.

            Meltdowns can be caused by anything from a minor incident, to a traumatic event. There are differences with a temper tantrum and a meltdown, when a meltdown occurs, the only way for a child to calm down is to either get exhausted (which also leaves the caregiver just as exhausted, if not more) or the child gains control of their emotions, which doesn’t happen most of the time and is very difficult for the child to achieve on their own. With a temper tantrum, children usually calm down quickly, whereas a child with aspergers will wail and throw a fit for extremely long periods of time.

            One big part of learning to cope is realizing that children with Aspergers usually don’t know or realize that their outbursts are inappropriate or exaggerated. At around age 8 or 9, it is recommended that parents talk to their child, only when they are calm, and mature enough to realize and understand that they have these outbursts, on how to control them and deal with things in a better way. Maybe developing a hand signal or sign to let the child know they are conducting inappropriate behavior. Don’t punish the child for having a meltdown, children with aspergers do not respond well to overwhelming emotions or aggressive punishments. If the child says they want to be left alone, do as they ask, checking back in on them is okay, but children with this syndrome like coping with emotions by themselves. Many children don’t like surprises or to be touched. When children without aspergers may hurt themselves and need a hug, those with aspergers may be sent deeper into their rage by the sudden and possibly unwanted physical contact.

            Here, at Shema Kolainu, we promote parental interaction at home to ensure the child’s developmental needs continue to be met and that they remain moving in the right direction. Parents, who understand and work with their children on how to appropriately cope with the real world, can develop an extremely deep bond with their child that they may never have accomplished otherwise. The key is to prevent the meltdowns before they occur, which is much easier than managing them once they have happened. A few tips to help prevent a meltdown would be avoid boredom, change environments, establish routines, choose your battles, give children control and choice over little things when you can, make sure children have a safe environment and are well rested and fed with a healthy diet, increase your tolerance level and very importantly, keep a sense of humor.

Original article


Aspergers Meltdown, How to Cope:

Higher Obesity Rates in Autistic Children

We already know that rates of obesity have been on a steady rise in the US. As we become more health conscious, researchers have begun noticing trends in weight gain when it comes to children and youth on the autism spectrum. Using a large patient database from the Massachusetts General Hosp Researchers looked at 6672 children, ages 2 through 20 years old, and found 2075 with autism, 901 with Asperger’s, and 3696 typically developing to use as a control. They calculated the body mass index (BMI) of each child using their last recorded weight and height and then calculated the differences between the groups. Twenty three percent of children with autism and twenty five percent of those with Asperger’s were obese and another fifteen percent and eleven percent, respectively were overweight.

In the control group they found only 6 percent of the kids to be obese and 11 percent overweight. “ We found significant differences at the youngest age category (2-5 years old) and persisted to the oldest age category,” Sarabeth Broder-Fingert of the Massachusetts General Hospital for Children and her colleagues wrote in this study, published in the July-August issue of the journal of Academic Pediatrics. 

Researchers have yet to identify the reasons behind the differences we see in these two groups, however, they say further study should examine how much time autistic children spend doing individual activities that don’t require moving, their access to physical activities and their physical abilities, and heir eating habits especially when it comes to food being used as a reward. Just earlier this year the Center for Disease Control and Prevention found obesity to be 50 percent more prevalent in adolescents with developmental disabilities and that those with autism face the greatest risk.

Many therapists and newer studies are finding that movement and exercises can have therapeutic results for children on the spectrum. Improvement in motor skills can have other positive impacts for children who struggle with communication even. This obesity disparity will be important to research and understand as we continue to develop best practices for those on the spectrum to lead happy and successful lives. 


For All the Moms with Autistic Children

Having a child or children with autism spectrum disorder can be hard on families, but can be especially hard on the immediate caregivers. Studies have shown that parents of children with developmental disabilities experience higher stress levels than caregivers of children without disabilities. And though we pay much of our attention to the needs of these children and ways to make sure they have the same opportunities as the rest of their peers, we cannot forget the daily efforts being made by their caregivers provide the best. Researchers say that more attention ought to be paid to the unique needs of these parents.

In a recent study published on Monday in the journal Pediatrics looked at how providing mothers of kids with developmental disabilities the resources to manage their stress can actually go a long way towards reducing depression and anxiety. Elisabeth Dykens of the Vanderbilt Kennedy Center for Research on Human Development, and her colleagues led the study where they provided two treatment programs and found that weekly training sessions with trained mentors had a positive impact on helping them interact more constructively with their children. Assessments taken before the study of the 243 mothers showed that 85 percent had elevated levels of stress, 48 percent were clinically depressed, and 41 percent had anxiety disorders.  After completing just six hour-and-a-half long sessions, the mothers in both treatment groups were already less stressed, less anxious, and less depressed, leading to better sleep patterns and overall greater life satisfaction.

The mindfulness-based stress reduction program included breathing exercises, deep-belly breathing, meditation, and gentle movements. The other program, called positive adult development, focused on exercises that promote gratitude, forgiveness, grace, and optimism, in an effort to temper emotions such as guilt, worry, and pessimism. These programs were all conducted by other mothers of children with developmental disabilities who received four months of training on the programs. The mothers in the stress reduction program actually showed the most overall improvement, though both groups saw improvements even after the six month study ended.

“The well-being of this population is critically important,” Elisabeth Dykens says, “We have a looming public health problem on our hands.” A mentally healthy caregiver will have better results in providing for their autistic child and it’s important to also include their well being in the context of creating brighter futures for our children. 

To read the orignal study, click here

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.

Be Safe Campaign Teaches Life Saving Skills

Emily Iland is the mother of her 30-year-old autistic son, who has grown into an independent and productive member of society. He lives on his own, holds a college degree, and works as an accountant. Before he was independent though, his mother spent many years advocating on his behalf. Now that her son is independent she is pushing to train autistic students, young adults, and adults alike on how to appropriately react to being stopped by a police officer.

People on the spectrum are actually seven times more likely than someone not on the spectrum to be involved with law officers as a victim, witness, or offender. In these interactions, autistics may act inappropriately, misread social cues, or become overwhelmed in a stressful situation.

Since 2007, Illand has been trying to train Los Angeles Police Department officers on how to recognize and interact with people who are on the spectrum. However, as much training as she would give the LAPD there was only so much they could do. “The police told me something,” she says, “If someone runs, you have to chase them. If someone puts their hand in their waistband, they have to assume they are reaching for a weapon. Even if they know that the person has autism, they have to respond to what they see.” This feedback made her realize the importance of training those on the spectrum, the appropriate skills to deal with law enforcement scenarios.

As part of her “Be Safe” campaign, Iland gives a few simple tips; don’t reach into your pocket, stay calm, show them your hands, if you are handcuffed or put into a patrol car try to be quiet, patient, and still, and if you are arrested make sure to tell the officers you have a disability and would like to speak to a lawyer. The “Be Safe” campaign included a DVD that features young people with autism role-playing police encounters, as well as a guidebook for parents, teachers, and counselors.

The video is based on real life cases where autistic individuals were misunderstood by law enforcement because they didn’t react with the appropriate social response, thus putting themselves in unnecessarily dangerous situations with the law. One mother, after watching the video, said about her autistic son who just got his license, “I worry about him all the time. He needs to know what to expect and how his actions are being perceived by police officers. He needs to know not to run, not to panic. I need to be able to trust his to let the officers do their job.”

Ever year, approximately 50,000 teenagers on the autism spectrum enter into adulthood and more recently because of expanding therapeutic services and programs, are able to enter the workforce, get a driver’s license, and be a part of mainstream society. It will be increasingly important for young adults, especially, who are on the spectrum, to have the appropriate skills to allow them to be safe and stay safe.

To read the original article, 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.

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.