A spectrum?: How we speak about Autism

2732-autism-4The Atlantic’s Rose Eveleth illustrates the complexities in the language used to discuss Autism Spectrum Disorder, and how the way we describe the condition makes it difficult to define.

Most people are familiar with the idea of a spectrum. “Autism Spectrum Disorder” is the way we think about autism and the way we speak about Autism. However, it is nearly impossible to chart where an indivdual falls on the autism spectrum. After speaking with doctors, epidemiologists, self-advocates, and anthropologists, Eveleth learned that the more we try to pin down what the autism spectrum really looks like, the less clear it will seem.

When you’ve met one person with Autism, you’ve met one person with Autism.No two individuals with Autism are alike. With changes in behavior and individual needs, there is no way to plot each individual condition on a line.

Stephen Edelson, the director the Autism Research Institute speaks on this: “With the spectrum, there’s a wide range, we’re still trying to figure out what that wide range means…I don’t have an answer. Scientific understanding of autism certainly continues to evolve.”

“I think there’s no one continuum necessarily,” says Lisa Gilotty, the autism-spectrum-disorders program chief at the National Institute of Mental Health. “It’s hard because…different people will break that up in very different ways, I’m not sure any of those ways are accurate.”

Because the spectrum has no established poles or ways of measuring, there is little data about how autistic people might be distributed along the spectrum. Different studies measure different aspects from intellectual disability, and verbal ability, and self-injurious behavior, but researchers know very little about what the autism population looks like as a whole.

Many research efforts focus on autism: the causes of the disorder, trying to identify genetic markers, and attempting to understand potential environmental contributors. Little of the funding goes towards figuring out what the spectrum looks like, or how to measure autism. Though experts might have said the spectrum went from “high functioning” to low functioning,” but those terms were never clearly defined. “We just don’t have good ways of measuring functioning-levels overall,” Anne Roux, a researcher at Drexel’s Autism Institute told Eveleth in an email. “For example, we know that 60-70% of people with autism have co-occurring health and mental-health diagnoses. Yet, there are really no measures that account for the role of co-occurring disorders in how people function.”

Part of why it is difficult to measure changes in intellectual disability is due to changes in how autism is diagnosed and classified. The 2013 Diagnostic and Statistical Manual of Mental Disorders (DSM) eliminated Asperger’s syndrome, a condition often seen as existing just outside of the autism spectrum. People who used to be diagnosed with Asperger’s have similar behaviors as autistic people- such as difficulties with social interaction and repetitive behaviors- but far fewer problems with verbal language. Now that Asperger’s syndrome is no longer a diagnosis, some of those people fell into an autism diagnosis, while some were no longer considered disabled.

Data from the Center of Disease Control and Prevention (CDC) is challenging to use as a baseline. The data tracks intellectual impairment, the IQ scores of 8-year olds, from 2010. The CDC cautions that the data shouldn’t be used to talk about all people with autism, as data represents a small portion of the population at a very specific period in time.

There are constant efforts in autism research, and the difficulties presented in surrounding discourse speak to a need to evaluate language and the way we speak about autism. Though “Autism Spectrum Disorder” is how we usually think about this condition, the future may present changes in how we think and speak about autism.

 

Study Supports Personalized Interventions & Tablet Use

tablet

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 … Continue reading

Visual Speech App Could Help With Communication

Keen State

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 … Continue reading

IMPROV Can Be A Great Resource for Autistic Students

Jen Olenizcak, founder of “The Engaging Educator” recently lead a program over the course of two weeks where six students on the autism spectrum and their families took a one hour class on the Neustadt Collection at Queens Museum, which is a collection of Tiffany lamps, windows, metal-work, flat and pressed-glass “jewels” and much more. What she noticed was that there were many individual successes but also the areas of empathy, eye contact, and imaginative play saw improvements through the whole group.

The students she worked with really liked her exercise in empathy. She would pair people up and while one person’s eyes are closed, their partner connects their fingertips and leads the “blind” person around using only the touch of their fingers. Children with ASD tend to have trouble with empathy, but for this activity, they carefully guided their parents around the gallery space and by week two  were guiding their peers around.

After the end of week one, the group ended with an activity called “Pass the Clap”.  It starts with the first person turning to the person next to them, makes eye contact and then they both try to clap their hands at the same time while maintaining eye contact. The next person then turns to the person next to them, continuing around in a circle to “pass the clap”. Eye contact is something that people on the spectrum in general tend to have a difficult time doing and some student had to be reminded to “see what color eyes” the person next to them had. However, they continued this for a period of time and it was a largely successful activity.

The group also engaged in imaginative activities where they had to try to embody different emotions like “happy” or “sad.” They also tried posing like the people they saw in the photos in the gallery and created their own stories about the plants and flowers design that they observed on the Tiffany lamps. For example Jen Olenizcak’s student partner told her that she was the tulip and then proceeded to act out a story about the wind, a bee getting pollen, and snowflakes falling on the tulip.

She was very excited with the level of engagement from the students and their families and though the results of this very short study was only tried this one time she is hopeful that perhaps if the program could be extended to more than two weeks, more than one class session so that perhaps we can see something really inspiring happen. “Would the empathy move beyond the class and contribute to a better understanding of emotions? Could the eye contact in “Pass the Clap” transfer to everyday life”? We don’t know the answers, but we would sure like to find out.

We will be talking about some emerging and innovative therapeutic practices as well as issues of empathy, specifically on Day 2 of our upcoming International Autism Conference. For more information and ticket registration, CLICK HERE!

The Incredible Progression of a Young Shema Kolainu Student

Like many children that have been diagnosed with Autism, 3-year old Daniel would refuse to communicate with words or even gestures. He would get frustrated to the point of tears, and would end up banging his head or pulling the hair of his teachers. They tried to get him to join in with social groups within his preschool class at Shema Kolainu, but he simply refused. Despite the fact that Daniel did not want to communicate, his teachers never gave up on trying, and were hopeful that one day he might find a way to express himself. What happened next was beyond what anyone would have expected.

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Daniel learned to use a board that had photos of some of his favorite toys and things that he liked. His teachers hoped that he would repeat the names of these items after they said them, because he would not feel as threatened or afraid to communicate about an item that he truly enjoyed. Eventually, Daniel began repeating words regarding things he liked. He would speak one word, such as “iPad”, “truck”, or “ball”. His communication abilities expanded further when he began saying that he would “want” each specific item. His ability to convey his longing to hold a specific item, is truly astounding, and his journey from being non-verbal to being able to express himself, is nothing short of miraculous.

Exploring the benefits of yoga for kids with autism

Yoga Therapy for Autism

We are always looking for new therapies and ways to manage symptoms and issues associated with autism, which is a developmental disorder that typically appears within the first 3 years of life. Autism can be mild or severe and interferes with a child’s ability to understand social cues and communicate. An autistic child has difficulty managing emotions and can display aggressive and obsessive behaviors.

The benefits we associate with yoga are improved strength and flexibility, concentration, and stress reduction, but did you know that children with autism and related spectrum issue can find great benefit in yoga as well?

Research has shown children with autism who practice yoga have reductions in anxiety, obsessive and aggressive behaviors. They also have more control regulating their emotions and become more calm and comfortable in their bodies. It becomes easier for them to be in control of their behavior, emotions, and experience less anxiety.

recent study as reported by NPR.com showed that elementary school-age children with autism who participated in a daily yoga program had shown a reduction in hyperactivity, aggressive behavior, and social withdrawal.

Step one to focus on with yoga therapy is breathing. Taking deep breaths and inhaling/exhaling in and out through the nose not only builds core strength, but also at the same time calms the nervous system.  This is very beneficial for an autistic child to learn to incorporate into their daily routines.

The ABCs of Yoga for Kids, which is published by Stafford House Books, Inc, encourages kids to utilize deep breathing with The Inhale Pose. “One of the most important parts/Of any yoga pose,/Is remembering to breathe deeply/By inhaling through the nose.”

Children with autism will gain new motor, communication and social skills through yoga resulting in an overall improvement in their quality of life. Yoga as therapy for autism will help manage the disorder by decreasing anxiety, improving concentration, and regulating self-control.

For more information about alternative therapies for autism, please visit: http://blog.hear-our-voices.org/category/therapy-2/

 

Nonverbal Autistic Teen Masters Written Communication & Advocates For ASD Education

 

 

 

 

If I told you a 16 year old wrote a book that is being assigned in university classrooms, would you believe me? Maybe. What if I told you that 16 year old is a nonverbal autistic?  Ido Kedar, a California teen with Autism Spectrum Disorder, has escaped the “solitary confinement”[i] of his body through mastering the motor skills necessary for communication tools like IPad apps. Ido is now able to express his feelings, opinions, and self-interest—insisting on inclusion in a regular education program and challenging experts’ assumptions about his condition. Ido describes the difficulty of his silent half-life saying, “It was terrible having experts talk to each other about me, and to hear them be wrong in their observations and interpretations, but to not be capable of telling them.” i

Ido advocates for integrated education through his blog and book, “Ido In Autismland,” and leads by example as an honor roll student. In his blog post Truth Over Theory, Ido describes his conversation with an open-minded professor as refreshing because, “more often, I think, people get used to their theories and stay there their whole professional careers.”[ii] Ido’s book has been assigned to college classrooms and is available on Amazon. In the personal statement of Ido’s Blog, he states his intent is to “help other autistic people find a way out of their silence too.”

Ido’s story was featured as an NBC News special, in which Ido was interviewed and able to respond via IPad, more articulately, in fact, than many people his age. The insight Ido has provided into the mind and condition of nonverbal autistics is monumental for the future of education and intervention strategies. Ido’s literary voice is unique and engaging—a true joy to read. Through his advocacy efforts and personal successes, Ido is altering the stigmas associated with autism. In an interview with NBC News Ido asserted,  “I want people to understand that not speaking is not the same thing as not thinking.”i

At Shema Kolainu, we believe all children have a voice. With understanding and support, we can hear the voices of all of our children too— whether through mediating tools like tablets, their own vocalization, or caring attention to the nuances of their behavior. Share your stories of communication barriers and successes here!



[i] Lin, Daisy, and Bruce Hansel. “Autistic Teen Uses Tech to Break Silence: “I Escaped My Prison”” NBC Southern California. N.p., 35 Apr. 2013. Web. 06 May 2013. <http://www.nbclosangeles.com/news/local/Autistic-Teen-Writes-Book-on-an-iPad–204775591.html>.

[ii] Kedar, Ido. “Truth Over Theory.” Ido In Autismland. N.p., 13 Feb. 2013. Web. 06 May 2013. <http://idoinautismland.blogspot.com/>.

 

 

Success Stories: Rescue Dog Helps Autistic Boy Communicate

The heartwarming story of a boy and his dog is an American tale told time and time again, but never quite like this. Seven months ago, Friends of DeKalb Animal Rescue in Georgia found an emaciated, abused puppy, naming her Xena the Warrior puppy after her miraculous recovery. Little did they know, Xena would be a bit of a miracle herself.  Xena’s pictures were so astonishing that she quickly became a celebrity, bringing in tens of thousands of dollars for the rescue group. At a fundraiser for the animal rescue, Xena picked a pal—running straight to a little boy named Johnny. Johnny is an autistic boy who is verbal, but has always been very withdrawn and uncomfortable with others. Their grand introduction was puppy-love-at-first-sight. Johnny’s family adopted Xena once she was healthy enough to bring home. According to Johnny’s parents, Xena brought about a change in Johnny almost instantly—encouraging him to talk often and excitedly. Johnny asked his mom to make a video of him and Xena for Autism Awareness month, which he learned is also Prevention of Cruelty to Animals month. In the video, Johnny is wonderfully spoken, sending a message about understanding saying, “Spread the word to be nice to animals and nice to kids like me.”

Animal assisted therapy is a popular approach to coping with autism, but rarely is it associated with communication skills and habits like Johnny’s transformation. Perhaps Johnny and Xena’s instant connection had something to do with Xena’s marginalization. Some animal assisted therapy programs are also animal rescue and rehabilitation centers, like Merlin’s Kids. In these programs, like with Johnny’s story, the support is mutual and the affects are astonishing. To see Johnny’s video, visit: https://www.youtube.com/watch?feature=player_embedded&v=LEG2CqTxHzw. Do Share your opinion on animal assisted therapy or stories of your children with animals!

Shakespearian Drama-Based Intervention Aims to Aid Communication for Autistic Youth

 

 

 

 

 

Ohio State University adapts a drama-based intervention program created by actress Kelly Hunter of the Royal Shakespeare Company in London. The program, called Hunter Heartbeat Method, utilizes the poetic rhythm of Shakespear (iambic pentameter) to aid autistic children with communication. The London program has been working with autistic youth for 20 years and rendered remarkable progress in verbal skills, eye contact, and facial emotional recognition. The Hunter Heartbeat Method is not just play-acting, it is a series of structured games based on the famous Shakespearean play The Tempest that work various communicative functions within a structure that is active, rewarding, and culturally educational. The youth practice speaking in emotive tones by tapping their hearts like a heartbeat (or in iamic pentameter) while taking turns saying the same word with different emotive connotations. A video of Ohio State University’s pilot program can be seen on their webpage, at http://nisonger.osu.edu/shakespeare-autism. Arts for Autism programs are becoming more and more popular worldwide, providing mediums of expression for the autistic community. This drama-based intervention is easily replicable and cost-efficient. If proven successful, this could be a great step for our school systems still lacking proper special needs resources. Tell us, at Shema Kolainu Hear Our Voices, how you feel about intervention strategies like this and check out our innovative programs!

Brain Sync in Children with Autism

A recent study led by Dr. Ilan Dinstein of the Weismann Institute of Science in Israel sheds some new understanding on the biology of the condition of autism. The study, conducted on a group of 72 normally sleeping children between the ages of 1 and 3-1/2 years, shows that the two areas of the brain commonly associated with language and communication were found to be out of sync in children with autism.(jpost.com) Continue reading