Category Archives: Research

Shema Kolainu Reaches out to Support Autism Parents

 

chani katz shema kolainu

Family time is crucial for building confidence in a child’s life. For parents of a special needs child, the everyday challenges for managing behavior and raising a self-sufficient child are magnified.

Yesterday’s Shema Kolainu workshop at Hotel Pennsylvania, hosted by IEP Coordinator Chani Katz, MA, BCBA, gave support for parents who have an autistic child. Ms. Katz presented strategies for parents to cope with routine issues, ranging from sibling relationships to toilet training.

Whether public or private, parenting a child with autism can feel stressful and even lonely. Others around will be quick to judge a parent’s methods before they have ever tried to walk in their shoes. Shema Kolainu- Hear Our Voices strives to not only provide top-notch education for our students, but also to help give parents the tools for success.

“It definitely brings a lot of lessons to the family when everyone is able to become more nurturing and empathetic,” Ms. Katz said when addressing the crowd.

Milestone’s in a young child’s life such as sleeping through the night or using the toilet properly can put them outside of their comfort zone. For an autistic child, creating a training schedule can prove quite helpful since they love structure. Other tips that have proven effective are to use positive reinforcement of good behaviors and to create a calming environment for activities the child may feel overwhelmed by.

When parenting a special needs child, it is important to remember that each sibling deserves just as much love. The other children may feel jealous and lonely when they feel that their sibling gets priority and extra attention. Some things that parents may do to combat this is to involve themselves daily in their children’s hobbies. Even if they only have a few minutes to devote to a child at the end of the day when they are drawing pictures, for instance, it makes them feel special.

It also helps to reach out for support when tasks become too overbearing for parents. Behavioral intervention services from a professional are often quite important for a child’s development. Parents may also choose to seek out support groups of other children like them to share wisdom. Sometimes, the help of a housekeeper can ease stress.

Above all, educating the public about autism seems to be the most effective way to minimize negativity from other. Katz suggests helping more “atypical” siblings through difficult situations by encouraging them to talk about it, and also to be open with others in the community about a child’s special needs.



Intense Auditory Behavioral Training Shows Promise

auditory autism therapy

A new study conducted by researchers in Mississippi and California was published in the Proceedings of the National Academy of Sciences earlier in February and claims they may have found a way to rewire the brain to possibly treat autism.

Dr. Rick Lin, a professor of neurobiology and anatomical sciences at the University of Mississippi Medical Center and co-author of the study, explains how researchers were able to use a method called intense auditory behavioral training on rats to observe outcomes of the treatment.

The rats were first injected with a drug in order to stimulate serotonin receptors, causing the rats to exhibit autism-like symptoms.  They began to show antisocial behavior towards each other and acted very atypical of a normal rat.

“The rats, they were just not going to play with one another,” Lin explained.  “Just how a child with autism prefers to play by himself, so were these animals.  They were also super nervous, and when we would try to excite them with noise, they would just freeze – that’s not typical of a rat.”

Dr. Michael Merzenich of UCSF worked alongside the teams to subject the rats to a series of tones and ticks that Dr. Ian Paul, professor of psychiatry and human behavior at UMMC, explains can create “plasticity”, meaning the brain actually changes over time.  Dr. Paul explained that when the rats heard the noises, they were hearing them at distorted frequencies, causing them to sound muffled – similar to what children with autism sometimes experience.

“Through this training, animals progressively sharpened their abilities to distinguish the fine difference between the sounds that they had heard.  This training had a dramatic impact on all of the autism-like neurological distortions in their brains,” Merzenich concluded.

The study lasted two months and showed promising results for the populations of male rats exclusively.  Scientists still don’t know why, but autism is four times more likely to affect males than females.  In proportion, if this treatment was to be conducted on humans, it would last about two years in a normal child’s life.  Although this treatment is still new, the researchers of the study are confident that their findings in coordination more support and effort can bring hope to families suffering from the effects of autism.

Written by Mara Papleo, Cleveland State University



Untying Knots of ASD and Associated Syndrome

understanding autism: untying knots

Autism spectrum disorder (ASD) is like a dense bundle of knots. Getting to its core can only be done by unraveling the complexities of numerous syndromes that are linked to ASD, one by one.

Doctor Alexander Kolevzon is currently working to comprehend Phelan-McDermid syndrome (PMS). A clinical director at Mount Sinai, Kolevzon directed a pilot study that aimed to improve the social impairments of those suffering of PMS, many of which also have ASD. The study was originally published in the December 12 issue of the journal Molecular Autism.

“Because different genetic causes of ASD converge on common underlying chemical signaling pathways, the findings of this study may have implications for many forms of ASD,” Kolevzon reported. The chemical signaling pathways he refers to involve the role of SHANK3, a gene found on chromosome 22. SHANK3 is highly involved in synapses, the gaps between neurons through which chemical messages are passed to reach individual target cells. Mutations and deletions of the gene cause developmental and language delays, as well as poor motor skills.

While the deletion or mutation of the gene causes PMS, it has remained unclear whether there exists a link between variations of the gene and autism until now. Mount Sinai’s preclinical study persuaded Doctor Kolevzon that a link exists, and inspired the hospital to conduct the first controlled trial of any treatment for PMS. Using SHANK3 deficient mouse models and neuronal models of SHANK3 deficient humans, the preclinical study indicated that reversal of synaptic plasticity and motor learning deficits may occur due to insulin-like growth factor-1, or IGF-1. IGF-1 is highly involved in synaptic transmission; it boosts synaptic circuits viability by promoting nerve cell survival and synaptic maturation. In addition, IFG-1 increases synaptic plasticity, the tendency for synaptic connections to change in structure and function to efficiently process novel stimuli.

The Mount Sinai placebo-controlled, double-blind study exposed nine PMS-suffering children, ages 5 to 15, to three months of IGF-1 treatment and three months of placebo. The order of treatment was random. Major improvements were observed during the IGF-1 phase as opposed to the placebo phase. Specifically, the children showed fewer signs of social withdrawal and restrictive behaviors, two indicators that standard behavior scales such as the Aberrant Behavior Checklist and the Repetitive Behavior Scale employ when assessing the effects of ASD treatments. Thus, the study became the first to explore the probability that the growth hormone IGF-1 can greatly ameliorate social impairment linked with ASD.

This study is just the beginning. Improving PMS symptoms helps untangle the cluster of knots that is ASD. Joseph Buxbaum, PhD, Professor of Psychiatry, Genetics and Genomic Sciences and Neuroscience at Mount Sinai, affirmed that “this clinical trial is part of a paradigm shift to develop targeted, disease modifying medicines specifically to treat the core symptoms of ASD.”

Maude Plucker, Tufts University



Unique As a Snowflake: Study Finds No Two Cases of Autism the Same

autism cases are unique

If you were to put a group of children together, the differences in their personalities would be obvious- the extroverted kids would lead the game, the shyer would hang back, friends would form bonds and take on a partnership role, and the rest filling the various dynamics of the group.

It is the same as children affected with Autism Spectrum Disorder- if they were to fill a room, their personalities shine and their unique differences would be immediately seen.

Although it has been commonly accepted that no two people with ASD are the same, the Hospital for Sick Children in Toronto, (Canada) recently conducted a study which looked at the genetic makeup of siblings affected with autism and their respective parent’s. They found that a significant (69.4%) amount of these siblings’ DNA code had varying aspects of ASD, making them as “unique as snowflakes”.

This means that siblings who both have the same autism diagnosis can have a different coding scenario, in turn showing a greater variation in their expression of the disorder. This helps to explain how a family with two children with the same diagnosis of autism can show significant differences in their behavior, as any other family can attest.

In the above mentioned article, Valerie South’s two sons (Thomas and Cameron) were both diagnosed with a type of low-functioning autism, which leads to difficulties in learning development. And like most brothers, they have their own expressions of self, different from one another.

In the study, their entire DNA sets were assessed, and it was found that, although they had the same diagnosis, the expression of the ASD-related genes were largely differentiating. The study had 170 participants with ASD, and looked at all genetic variations that were relevant to the disorder (both their genetic makeup and the outward expression of the gene). It also looked at the structural variation of the genes associated with the spectrum.

With almost 70% of the siblings showing significant genetic variation in relevant genes, this scientifically backed hypothesis confirms the anecdotal knowledge parents with children of ASD have known for years; the variability between siblings is as significant as any brothers or sisters without the disorder, and ultimately, no two cases of autism are ever the same.

This innovative study brings to light how Autism Spectrum Disorder is viewed, studied, and treated. The concept that no expression of this development disorder can be considered thesame calls for complete tailoring of therapies, treatments, as well as how people are diagnosed.

The image of this disorder as a spectrum has now been reinforced with the information from this new study, and it is time to open the discussion on how these individuals should be cared for, and how we talk about autism.

Written by Sydney Chasty



How a child with Autism Processes Social Play

autism children play

In a first-of-its-kind study, researchers at Vanderbilt University examined social play exchanges on multiple levels, revealing associations among brain regions, behavior and reactions in children with autism.

“Play is a fundamental skill in childhood and an area in which children with autism often have difficulty,” said the study’s principal investigator, Blythe Corbett, Ph.D., associate professor of Psychiatry and a Vanderbilt Kennedy Center investigator. “However, the psychobiological study of play in autism is seldom comprehensively investigated using multiple levels of analysis.”

Children were given an MRI that tested how they reacted to being placed in playful situations with new children, familiar children, and by themselves. When the child was placed in a playful situation with an unfamiliar child, he resorted to playing alone. What this MRI taught us is that it is important for parents of children with autism to recognize that their child has to gain familiarity with others in order to socialize.

ICare4Autism is an advocate for relationship building and socializing.Children with Autism are not Anti-Social.  We believe that a child should be given the necessary time he or she needs to get to know someone. Take your time teaching your child who’s in their presence and allow them time adapt.



UW is Funded $3.9 Million Used for Early Autism Detection Program

bigstock-doctor-using-a-digital-tablet-31270601

 

The University of Washington was recently granted $3.9 million from the National Institute of Health to continue a program that uses tablets as a way to detect early Autism, a condition that now affects one in every 68 children.

Dr. Wendy Stone, who has been leading UW in the development of the new Autism detection technique, explains that the grant money will be used to purchase tablets that will assist physicians in diagnosing children with early Autism.  Parents will be able to fill out the web-based M-CHAT (Modified Checklist for Autism in Toddlers) questionnaire using one of the tablets in the physician’s office.

The goal of having parents fill out the M-CHAT is to help doctors detect Autism as early as possible, and the tablets could assist tremendously.  Often times doctors become too busy, and follow-up questions for the M-CHAT are not addressed.  The tablets, however, can and will help parents thoroughly complete all parts of the questionnaire.

Dr. Stone, who has been researching Autism since the 80’s, points out that although there is still no definitive cause or cure for Autism, early detection is the best possible way to hinder the disorder.

“Twenty-five years ago, when we diagnosed autism it was in older children and we would have to say to families, ‘Your child has Autism, and your child is always going to have this disorder.’  Now when we diagnose at 18 months or 24 months we say it’s a whole different story for parents.”

ICare4Autism has been a great advocate and source for parents needing help with early detection. Early detection can make a huge difference in the life of a child living with autism.

Mara Papaleo, Kent University



Jobs for people with Autism!

As some may know, people with autism may have a difficult journey while during the job hunt. However, we came across an amazing Car Detailing Company in Florida that employs 35 people with autism spectrum disorder.

The D’Eri family started their car wash when their son Andrew, 25, was having trouble finding a job. The idea was to start a small business that only employed people with autism to show the world that people with autism are not unemployed because they are unable to work. They are, in fact, talented, brilliant, and trustworthy people who deserve a chance at working for any organization.
The D’Eri family did exceptional research in starting a business that not only put their employees to work and gave them financial stability, but they also chose a business that would challenge and teach their employees physically and cognitively. They found that working at a car wash exercises the motor sensory skills as well as social skills. All of the employees greet the clients, wash the cars, and share turns collecting and documenting the money.
If the D’Eri family can create a successful business with 35 autistic employees, this idea opens the door for other businesses to create similar programs that positively shape the lives of those they mentor. It is fair to say that things are changing and looking up for people with autism in the work force.
ICare4Autism has also joined in assisting people with Autism in the workforce. We have created an innovative vocational program that provides job readiness, resume writing, and training. Let’s continue to be the change we want to see!

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Does Your Child Tend to Wander? Help May be Available in Your Community

autistic child wanders off

It’s a parent’s worst nightmare to have his or her child wander off and be out of sight. 

The panic and helplessness that sets in is unbearable, and for parents of autistic children, it is even more common and dangerous.  That is exactly what happened to Daisy Chappell’s mother when she found her 10-year-old, autistic daughter, Daisy, outside in the freezing cold on January 2nd.  Thankfully, Daisy is now recovering in a local hospital after a bout with frostbite.

According to a study done by the Journal of Pediatrics, almost half of autistic children will try to run away by the time they are four years of age.  Jennifer Smith, the mother of two autistic young men who are now in their twenties, wanted Daisy Chappell’s mother to know she is not alone.  Smith reached out to the Chappell family when she heard of the story through a news alert on her phone and wanted to share her stories and advice with the Chappell’s.

Smith, who has slept on her couch for the past 7 years to ensure her sons cannot escape her home, also has locks, sirens, and a dog to help keep her boys in the house.  But despite her best efforts, her sons have escaped and wandered out of the home quite a few times. 

“They’re smart.  They are so smart.  One time I watched as Cameron picked up the chair, dragged it to the front door and undid the locks,” Smith states.

Although she still worries about her sons to this day, Smith has decided to proactively devote her time to the Autism Society of the Heartland in the Kansas City Metro.  There, families of autistic children are provided with swimming lessons, grants for home security systems, and even training for parents.

Another organization aimed at helping families of autistic children remain safe is the Autistic Training Center of Kansas City.  There, children aged 2 to 12 work with an instructor on many different aspects, one of which is the hazards of wandering.

“Our number one recommendation for families is to teach safety skills, and this should be taught to all children.  This can be anything from when to open a door, not to go around large bodies of water, or stranger danger skills,” said Jenny Regan, the communications director at the Autistic Training Center of Kansas City.

Mara Papaleo, Cleveland State University



Georgia Joins the Ranks of States Requiring Insurance Coverage for Autism Treatment

autism insurance laws

Thursday, January 29th, 2015 was a happy day for 10-year-old Ava Bullard and her mother, Anna Bullard. After years of hard work, Senate Bill 1, also know an Ava’s Law, was approved in an unanimous decision requiring insurance companies to provide evidence driven treatment that’s been shown to help children with autism spectrum disorder.

At the age of 2 Ava couldn’t speak a word, respond to her name or seem to recognize her mother.  “She was staying the same, like she was 6 months old” says Bullard.

After months of research, Bullard found that there are children with autism whose worlds were rediscovered through intense therapy.  Once a formal diagnosis was made, Bullard could not believe nor afford the price tag of treatment. She soon learned that her insurance company wouldn’t cover any of the expenses.

Research has shown that intensive behavioral therapy can significantly improve cognitive and language skills in young children with autism spectrum disorder. During an interview conducted by the Autism Heath Insurance Project, Dr. Karen Fesset, DrPh, founder and executive director of the Autism Health Insurance Project said  “Without these therapies, children will likely cost their states considerably more money in the long run, by requiring special education programs, and possible needing a lifetime of public assistance,”

Georgia joins New York, Nebraska, Oregon, plus 33 other states including Washington DC which have autism insurance mandates. 

For a list of states that provide coverage for Autism Treatment please see the attached link: http://www.autismhealthinsurance.org/health-plan/affordable-care-act



“You Said What?” The Importance of Lip-Reading in Conversation

lip reading

One of the hallmark symptoms of autism spectrum disorder is an inability to read other person’s facial expressions and link them to their emotional state.

Not only does this disabled understanding of the face diminish emotive recognition, but it also contributes to an overall lack of attention to the face during conversation. Such a lack means that persons with ASD are not well practiced in communicating in noisy environments, where lip-reading pays an enormous contribution to conversation. Indeed, researchers have discovered that persons with ASD barely use other people’s faces as a point of context in identifying both emotions and linguistic elements; as a result, large parts of communication are lost on them.

At Southern Connecticut State University, researchers have been working with autistic adolescents on this skill in their program “Listening to Faces” which is aimed at improving conversational skills. Working with these adolescents, they have discovered a disconnect between participants’ understanding of communication and the face. In studying this discrepancy, researchers hope to improve early therapy that could significantly increase the quality of relationships for young children with ASD.

With the use of brain imaging technology, Professor Julia Irwin, who runs the program, hopes that she and her students may be able to better identify the neurocognitive components underlying this behavior. For the time being, however, she is just grateful to be able to offer further insight and therapy into this phenomenon. Parent Diane Vergara shares her gratitude that her son “definitely made an improvement even though it was a short period of time” with this therapy program, and lauds their attempt to identify the right tools in increasing productivity.

If interested in learning more about this research, you can email listeningtofaces@haskins.yale.edu.

Written by Sara Power, Fordham University