Category Archives: Education

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



Utilizing Restricted Interests Improves Reading Comprehension

literacy research for autism

Narrow, specific interests are a characteristic for those with autism spectrum disorder. A group of university researchers wants to channel this tendency into a method that will improve literacy.

“Perseverative interest” is the term that describes this phenomenon. Researchers at UVA have discovered that by including a child’s restricted interests frequently in their reading material, literacy instruction may improve the child’s comprehension.

University of Virginia Curry School of Education Professor Michael Solis collaborated with Cleveland University Professor Farah El Zein and designed a literacy curriculum which uses a child’s specific interests frequently within a story. If a child loves trains, the texts references trains several times.

When he tested his model, Solis discovered that the method improved enagement with the material for the children who participated. They then performed better on curriculum-based tests as well following the experiment.

Solis was inspired to delve into this research after conducting a thorough search on the availability of instructional methods designed to improve the scholastic performance of children with autism. He discovered that there was a surprising lack of such data available on reading comprehension, and much of the data available lacked stringency.

According to Solis, most of the specialized instruction for autistic children focuses on improving their social skills and behavior. The most widely accepted methods for increasing reading comprehension among children with autism is to apply the same methods used for a variety of disabilities.

Since Solis is an expert on tailoring reading instruction to suit a variety of special needs, he set out to create a more specialized, and therefore more effective method of teaching reading comprehension to children with autism.

“Reading comprehension is critical to academic success, enabling attendance in college and meaningful employment,” Solis said to NBC29. “We really need to close that gap. Conventional reading interventions used in special education classrooms are not bringing the results with children of autism as they are with others.”



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



Book Reaches Out to Parents Struggling with Child Disabilites

 

mental disorders and autism

For any parent of a special needs child, he or she is well aware of the challenges that crop up on a constant basis. A mother of four children with mental disabilities has now written a book to help parents cope with that overwhelming feeling of not knowing where to turn.

Ann Douglas’ book “Parenting Through the Storm,” reaches out to gather a large variety of perspectives. Over 50 parents of children with mental health challenges were interviewed, as well as mental health professionals. Their stories carry a message of hope for parents and provides advice on how to cope with mental disorders and illnesses.

The author’s own story has been a tumultuous one. Her daughter has battled depression and bulimia, and all three of her sons were diagnosed with ADHD. Her two youngest sons struggled in school with writing-based disorders, and her youngest son Ian has Asperger’s Syndrome, a form of autism spectrum disorder.

She mentions in the book how the genetic variations that are linked to ASD often result in other mental disabilities within a sibling, like bipolar disorder. This is why it can sometimes feel like mental challenges are “stacked up” within a single family.

Douglas herself has fought against the current and suffered through mental health issues as a result of her childrens’ difficulties. She battled clinical depression for about three years. The author makes a point in her book to emphasize caring for onesself for her readers. In order to provide the best life for your children, you must make your own health a priority.

“You find yourself in the situation and you have no choice but to cope because the kids are counting on you to cope,” Douglas said in an interview with Brandon Sun.



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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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



“Happy Birthday!” means “Hallelujah!” for Parents of Autistic Girl

5 year old autistic girls speaks after years of silence

Picture a sweet babbling toddler. Now picture a three-year-old screaming and slamming her head every time you try to exit the house. Cue the early years of Ave Arreola.

Despite a rough birth in which her twin sister died, Ave began life similarly to any other baby. She followed typical developmental patterns, babbling and engaging with her surroundings, until the age of 2, when she abruptly fell silent and stopped interacting with her parents and peers. A diagnosis of “autism” shortly followed as her temper tantrums escalated. Her parents desperately sought a solution to calm their daughter’s seemingly unstable reality.

The Arreola family started bringing Ave to therapy at the Center for Children with Autism at Metrocare Services in Dallas, TX. Metrocare Services opened a few years ago after administration noticed the growing population of autistics in the Dallas area. The center just opened a second location recently, so they are now able to serve an additional 270 children with ASD who come from low-income backgrounds.

Despite a rocky start, therapists there have been able to begin developing routines and coping mechanisms for Ave to attach to during times of emotional duress. The center teaches social skills to the children and helps parents develop custom programs to help their children.

After years of silence, 5 year old Ave unexpectedly wished her 19 year-old brother a “Happy Birthday!” while the family was celebrating. They are the first words she has spoken since she was two. Since then, she’s begun singing along to TV shows, and her speech therapists have had greater success in reciprocally communicating with her.

“I don’t think we ever give up on the hope that a child will talk,” said Sarah Loera, program manager at the Center for Children, to Dallas News.

Work with the Metrocare clinic has not only given the Arreola’s daughter’s voice back, but has stabilized their entire family structure. Therapists have helped them design behavioral strategies for Ave to follow, and have given them advice on how to make Ave’s immediate world a little less daunting.

Sara Power, Fordham University



Autistic Teens Start with Gumball Machines to Learn Business Management

autism gumball machine business

While you are out and about in your local mall or your local doctors office, you may see a gumball machine.

Simply put in a quarter, turn the knob, and a gumball drops out of the chute. Something you may have not known is that those simple gumball machines sometimes provide benefits to people, even jobs. In this case, four young teenagers by the name of Ronny, Dylan, Jack, and Reshaun have begun lessons in entrepreneurship through these little candy machines.

These young men also happen to have autism spectrum disorder, but they aren’t letting that stop them from learning to become successful like anyone else. Easter Seals, which is a service that reaches out to all people of different disabilities including autism and more, has created a program called “Bubble 2 Work”. Their job is to maintain, re-fill, and collect money from the machines. With that, the seeds are planted and the boys begin to understand how to run a business.

Kelly Anne Ohde of Easter Seals has stated that it’s an opportunity for them to gain real world experience for them.

Gumball machines are located in 17 south suburban establishments in Illinois where people interact with others, including customers and even a state senator, Senator Michael Hastings. Hastings describes that the four teens are “great kids.”

“We traded movie quotes, what’s going on and what it’s like to be a senator,” he says of his relationship to the four young men.

Not only are the teens learning how to run a business which will indefinitely help them in the future, they are also improving their social skills and even learning new things from influential people like Hastings.

And that’s not all. Ronny, Dylan, Jack, and Reshaun’s job training teaches other people about autism.  Tony Gloria of Rocco Vino’s Italian Restaurant, where the four work on the gumball machines, welcomes them to eat there on their lunch breaks, saying that they have a “personal understanding.”

In this day in time, we must remember the importance of instilling knowledge into our young people regardless of the challenges they face. All children and teens deserve an equal chance at a bright and successful future.

Taja Kenney, Eerie Community College



Quick Behavioral Observations Frequently Overlook Signs of Autism

Lynn Burton reads to her daughter Adelaide. Many toddlers her age are not receiving potentially life-saving autism screenings. | Medical XPress

Lynn Burton reads to her daughter Adelaide. Many toddlers her age are not receiving potentially life-saving autism screenings. | Medical XPress

Parents should not rely solely on a medical professional to detect a child’s autism, according to a new study published in the journal Pediatrics.

Research shows that bringing a child to a 10-20 minute pediatric behavior monitoring session is not sufficient to determine if a child has autism. Parents who trust that their child’s doctor will be thorough in their examination without paying attention to their child’s developmental signs day to day could be missing some key information.

These short sessions simply do not give the clinician enough time with your child to make an accurate diagnosis. The medical professional cannot gather enough information at a simple checkup. Thus, many children with autism will show normal behavior during this window, and will not get referred to a professional who can provide the treatment needed.

If autism symptoms are missed early on in a child’s life, they may miss a crucial point in their development in which early intervention is most effective. Autistic children who receive early intervention and treatment before age three have been shown to vastly conquer or eliminate their symptoms before entering school. Just like learning a new language, changing the child’s brain in this way becomes more difficult after they leave the toddler years behind.

In the study, ten minute videos of children ages 15-33 months were viewed by experts in the field. Children with autism, speech delays, and normal development were all included. It was found that the quick observation was not sufficient to gather accurate conclusions, and the experts missed 39 percent of the children with autism since they displayed typical behavior during this time.

The CDC reports that autism diagnoses have increased 30 percent during the past two years, when the statistic jumped from 1 in 88 to 1 in 68 children. This is why a correct diagnosis early on is especially important.

What this means for young children with autism is that they would benefit from more detailed observation. Exploring in-depth autism screenings and extra attention from parents are key steps in understanding a child’s development.

A parent usually knows their children more intimately than anyone else, and if educated properly, can recognize the symptoms of autism on their own, and alert the child’s care provider to determine the next step.

The American Academy of Pediatrics recommends a formal autism screening for children at the 18 and 24 month mark. A few simple screening tools that help parents know the signs to look for are available to use free of charge. One of these is the M-CHAT-R Checklist. Another resource to use is the CDCs Learn The Signs, Act Early campaign.



Nonverbal Children Show Marked Improvement Using Video Series

 

Gemiini

An innovative yet relatively simple video series therapy may prove effective in treating speech disorders.

Laura Kasbar’s twins were diagnosed with autism as young children. They did not respond to the speech therapies offered to them, so Kasbar realized that she had to search for an effective solution to their speaking difficulty.

Now Kasbar’s twins are grown and they excel college. Their mother claims that a large part of their success can be credited to her invention, The Gemiini System. This series of speech therapy videos may soon be reaching children all over the country, or possibly the world.

Videos from the Gemiini System lay things out in a way that children understand. For each word, a child appears onscreen accompanied by a picture demonstrating the word’s meaning. The word is spoken slowly and clearly several times. This includes a close up of the child’s mouth when speaking the word.

The Gemiini system uses a method called “discreet video modeling.” This method is effective for many because it presents words with their associations so the children grasp their meaning. This direct approach allows autistic children to concentrate on learning.

Dr. Amanda Adams, Clinical Director of The California Autism Center and Learning Group in Fresno, California, is interested in using the Gemiini system, stating it can work well when combined with other therapies.

“Along with good behavior intervention, a good school program and all of the other pieces still in play, this tool I see as a supplement.” says Adams.

Dr. Heather O’Shea with autism therapy provider ACES in Fresno, is looking forward to using this therapy within her own company.

“We’re very excited about it. We are starting to implement it, the research is giving me great hope,” says Dr. O’Shea.

Since Laura Kasbar’s twins have progressed so well, she is optimistic about the success of other children using The Gemiini System. She emphasizes the importance of starting such therapies young, in order to increase the chances of lessening or eliminating speech difficulties the children face.

These videos are available online for parents, teachers, and therapists. This is good news for families that struggle with insurance coverage for the therapies they need.

The website asserts that The Gemiini System may also be used for children who struggle with reading. Additionally, Kasbar says the system is effective for adults who need speech therapy. These include stroke survivors, those affected by dementia, and patients with traumatic brain injury.