Category Archives: Special Education

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.



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.


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!



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!

 



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



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!



Autism & Self-Advocacy

How do we teach children on the spectrum to be confident and independent self advocates? When children are young the parents or caregivers have the responsibility of fighting for health insurance coverage so that they have access to all the appropriate therapies that they need, for example. However, as Sharon Fuentes, a blogger in Northern Virginia and a mother to a boy with Asperger’s, point out, “I’m not always going to be here. My main goal in life, for any child, is to raise an independent, responsible adult who is able to function in the world and be able to contribute to society. We all have to advocate for ourselves. The reality is that with special needs kids, if they able to learn these skills just by watching, they would. But they can’t so we have to teach them.” 

Parents can help their children be better self-advocates, as they grow older. First the child should be aware of what his/her needs are as well as her specific strengths and weaknesses. Jim Ball, executive chairman for the national board of the Autism Society says that you want to make sure that your child also knows how to filter the information they give out about themselves. “They are so trusting of people and so open and honest about who they are, which is one of the qualities I love most about them …so you have to teach them that there is a time and place to discuss it.”

Here are some tips on teaching your child to express their diagnosis and express their specific needs

- They should understand the difference between needs and preferences. For example, for Fuentes’ son, who is 13 years old, she had to explain to him that sitting close to his teacher in class was a preference, while having a quiet space to retreat and collect his thoughts when he gets overwhelmed is a need.

- Writing a note to their teachers. For older children especially it can be a useful exercise to write a letter to each of their teachers to explain who they are, what they like and dislike, what causes them stress, and what they most need to succeed. This is not only great for their own self-awareness, but also a great resource for the teacher.

- If it’s possible, include the child in their own Individualized Education Plan (IEP) meetings. They can voice concerns over situations that may be problematic for them as well as gain a better understanding on how things work. “Just asserting what they want is important for anyone to be able to have a sense of self-worth, and a sense of confidence that you can share what you want and people are listening to you,” says Fuentes.

- It’s important to talk about who are “safe people” when it comes to sharing information about themselves. They do not need to tell everyone, including all of their peers, where someone may use the information against them in the case of bullies, for example.

- There are many books that can help with advocacy. Jim Ball recommends “Ask and Tell: Self Advocacy and Disclosure for People on the Autism Spectrum,” edited by Stephen Shore.

​Stephen Shore will be one of the many presenters speaking on Self-Advocacy at our upcoming International Autism Conference! Join him and others by clicking HERE!


Autism Mom Inspired

Shannon Nash with her son Jason, who helped inspire her to launch Autism Job Board, a new website for job seekers with autism spectrum disorder.

Inspiration can come along when you least expect it. For Shannon Nash, an attorney in Atlanta, that inspiration was her autistic son Jason. Jason was diagnosed with autism at 18 months old. Doctors and therapists were skeptical about how much progress he would make as he got older, setting the expectations for her son at a very low level. 

Jason is now 16 years old and needs continuous speech therapy for probably the remainder of his life. Despite needing therapy sessions along with other day-to-day struggles of being on the spectrum, Jason has made a lot of progress. He has excellent receptive language skills according to Nash and she is currently considering sending him to a Minnesota based program to earn his associate degree that will help him succeed in the workforce.

Nash had never anticipated that her son would be able to even consider higher education as an option, but now that it is she is worried about his job prospects. According to a 2012 study from Washington University only 55% of young adults with autism had a job over a six-year period following completion of high school.  The chances of being unemployed and/or not continuing their education are more than 50% greater for young adults with autism when compares to their peers with other disabilities.

Nash decided that she would start looking for resources for her son ahead of time so he wouldn’t become part of those statistics. “I thought surely my search terms were off or there was something wrong with me, but the more I looked, I found very little,” Nash explained. This is when she came up with the idea to build a job board website, called “Autism Job Board” which will not only have searchable job postings, but also information for employers on best practices for hiring and employing people on the spectrum. So far she has received positive responses, although building the job board itself has been a slow process.

Apart from pushing to get more employers registered on her site she hopes that the job board will eventually be able to host job fairs across the country. She remains optimistic that employment opportunities will grow over time for people on the spectrum, “We want to educate people and make them understand this is a workforce to really get behind, and I can tell you it’s going to happen because it’s too many kids aging into adulthood.”

​Day 1 of ICare4Autism’s International Autism Conference will be dedicated to addressing issues of Autism in the workforce as well as discussing current initiative being made toward improving job prospects for people on the spectrum. For more information and registration, CLICK HERE!


Autism Takes Strides in the Workforce

There is a growing population of young adults who are on the autism spectrum that are now emerging into the professional world and unable o find a job for themselves. There are a large number of them who are classified as high functioning, who have achieved higher education, and who are more than capable of joining the workforce.

Only about 35 percent of young adults on the spectrum actually move on to postsecondary education, and of this 75 to 80 percent are unemployed when they graduate—which equates to about half a million people. Marcia Scheiner, president and founder of the Asperger Syndrome Training and Employment Partnership (ASTEP) presented these figures in a recent panel as part of Internet Week New York. She argues, “Today’s interview process is largely based around the concept of socialization: Your ability to network, your ability to interact with othersThis can be one of the biggest challenges for individuals on the spectrum.”

Scheiner’s approach through ASTEP provides support and education by, for example, persuading human resources at Fortune 500 companies and others to expand the neurodiversity of their workforce.

“People that already appreciate difference believe that by being more tolerant and being able to see different kinds of people, they are going to build a stronger team,” co-founder of software testing company “Ultra Testing” , Rajesh Anandan, says. The traditional methods we normally use to assess individuals don’t work so well for people on the spectrum, though, so how do we change the assessment so that it is informative for the employer as well as fair to other candidates?

Knack is a company that wants to use games to evaluate specific attributes and skills that an individual may have. Halfteck, the founder of Knack, says, “Games are very nonthreatening, because there is no interaction with peoplecausing anxiety, causing all sorts of other fears. Not everyone is good at interviews, not everyone is good at social interaction.”

Both Halfteck and Anandan believe that the employment rate for people on the spectrum will soon start to increase once there is data that proves that there are environments where people on the spectrum regularly outperform their neurotypical colleagues—driving an increase in recruitment.

To hear Marcia Scheiner speak more on autism workforce initiatives, come to Day 1 of our International Autism Conference! Click here for more info!

Click here for original article