500 Kilometers of Love

500km walk for autism treatment

It’s been said that a mother’s love for her child is one of the fiercest kinds there are. It’s immeasurable compared to all other attachments.

Such a relationship transcends all normal boundaries. Dee Gordon, mother of a special needs child, is proving just how far that love can go…literally.

Mother Dee Gordon has pledged to walk 500km in honor of her son Jake, who suffers from autism. Her ending destination is Parliament Hill in Ottowa, where she plans to urge the Conservative government of Canada to fund a national strategy to provide treatment for persons with autism. For the past two years, Gordon has prepared for her walk by walking 30km, every Tuesday and Thursday, to Queen’s Park in Toronto where she protests for two hours. She carries a bell which she rings with her while she walks, signifying the lost voices of so many autistic children, like her son, that don’t receive the treatment they deserve.

Currently, Canada has no such program, despite all the proof that the right treatments can significantly improve the quality of life for persons with ASD. According to Autism Ottowa, “Families must pay out of their own pockets for a very large portion of expensive autism therapy- whose cost may reach $60,000 per year – because provincial and territorial jurisdictions offer only limited financial assistance.” Last Thursday, Gordon embarked on her journey. Along the 500km, she plans to make 8 stops where she will speak with media and local residents about the need for Canada to plan a strategy to combat the injustice of nonexistent resource provisions from the state.

“As a mom with a child with ASD, I have had to fight every day for real help with my child,” she wrote on her website. “I have watched other families fight as hard as I have, and this is simply not right.” To follow her courageous journey while she fights for her son and all of the children with ASD suffering in Canada, you can visit @WalkToOttowa on Twitter.

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The Cingulate Cortex and the Self: A Major Advancement in Diagnostic Research

two minute test for autism

Lately, there’s been a lot of debate regarding the efficacy of pediatricians’ diagnostic assessments of young patients who should be screened for autism.

Most of these diagnoses rely primarily on measures that are not quantifiable, meaning that they cannot truly be measured in scientific terms. Such tests are often unreliable and do not provide enough insight to reach firm conclusions regarding the child’s developmental state. Furthermore, these tests are often time-consuming and expensive for both the parents of the child being tested and the doctor. However, in an intriguing new study at Virginia Tech, researchers have discovered a potential option that may just take two minutes to test for autism.

According to researchers at VT’s Carilion Research Institute, there is a perspective-tracking response in the brain that acts as an excellent quantifiable marker, unlike emotions that are harder to measure. This response can be measured in the middle cingulate cortex, which is responsible for drawing distinctions between the self and others.

In their study, the experiments showed a group of children, both typically developing and on the spectrum, a series of images. Fifteen of these images were pictures of themselves while the other fifteen were pictures of other individuals. They found that those children who later tested positive for autism did not have particularly active responses in their middle cingulate cortex when they were shown images of themselves, indicating a lack of self-concept. However, the typically developing children showed an intensely elevated response. Over a series of trials, they found that these results remained consistent and thus indicated a reliable diagnostic method that clearly identifies the presence of autism within the brain.

The results of this study are very promising, though they require further development. However, it demonstrates a giant leap in the world of clinical diagnoses. Using responses in the middle cingulate cortex, as measured by fMRI’s could streamline efforts and strengthen doctors’ assessments by adding a mathematic component to their evaluation of the child in question. There is still a long way to go before this research at VT can reach such a stage, but thus far, trials show a promising development that could lead to earlier diagnosis and treatment for children on the spectrum.

Sara Power, Fordham University

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Sensory Adapted Swimming Lesson System for Children with ASD

 

autism sensory swimming lessons

 

Great tragedy is at times a fact of life, though it is in many cases avoidable.  In the summer of 2014, a 5 year old autistic boy in Missouri named Tony Eugene “Gene” Ferguson drowned in a nearby pond after wandering out of his house when a repair crew left a door open. The loss of a child isn’t easy for anybody, and most of the time we are not prepared for it.

News like this has everyone on their toes. So, how we can we keep autistic children safe in and around water? The University Of Kansas Department Of Occupational Therapy Education feels they have come up with a solution. Researchers at this institution have created a program they feel will effectively teach kids with autism how to swim.

Sensory Supported Swimming has been supporting autistic children from the age of 4 to 17 and teaching them how to navigate the water. Although different children have different ways of processing and learning new things, support staff is available to help them learn using methods they respond to. Alison Moore, a mother whose 7 year old son participates in Sensory Supported Swimming, says that “He loves the water and this is something he can enjoy.” She also added that she put him in regular swimming lessons and he was not progressing, though she knew that he was capable of learning. Her son is now comfortable in the pool and can even tread the water!

Lisa Mische Lawson, a certified recreational therapist and Associate Professor at the University Of Kansas Medical Center was able to get the funding for the program through a non-profit.  She stated that many families couldn’t access lessons, especially ones that were affordable. This program is the perfect one for those families that are concerned about their autistic loved ones and water safety. One issue that is present at the time, however, is that so few people are certified to teach lessons while also having an in-depth knowledge autism spectrum disorder.

Taja Nicholle Kenney, SUNY Eerie Community College

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Blood Test for Autism Hits Market Later This Year

autism blood test

When parents are first told that their child is diagnosed with autism, it is usually an overwhelming and stressful experience.  Because one in 68 children is born with autism today, doctors are beginning to test for the disease as early as possible.

Early treatment of autism is one of the most important elements of treating the disease, because the child’s brain is still young and pliable. Usually treatment begins at about six months to a year in age, but now a simple blood test developed by San Diego’s Pediatric Bioscience can unveil a predictor of autism far before a fetus has even been developed.

The test screens for “maternal autoantibody-related” autism.  These antibodies reside in the mother’s blood and are responsible for 23 percent of all autism cases. Because changes in a pregnant woman’s immune system could compromise the accuracy of the test, the test is intended to be used before a woman becomes pregnant.

Due to the high rate of children being born with autism today, this test is ideal for planned pregnancies to have possible alternatives, such as using a surrogate mother or opting for adoption.  For women who already have one autistic child, their chances of having another autistic child are about 17 percent.  If they test positive for the antibodies, their chances having another autistic child increase even more to 72 percent.

Immune research led by Judy Van de Water at Pediatric Bioscience has shown that there are seven antibodies related to autism.  They believe that some of these antibodies in pregnant women may attack proteins that are responsible for fetal brain development.  Their new study related to this topic, which was published in the journal of Cerebral Cortex, showed developing mice brains were affected in the glial brain cells of the ventricular zone when the human maternal autoantibodies were tested on them.  The study concluded that this could possibly explain the occurrence of autism.

Although the test is priced at roughly $1,000, insurance companies are expected reimburse families for the cost.  For women who are unable to pay, the cost can also be reduced to make it more affordable.  Currently, there are only behavioral tests available to test for autism in babies and children, making the researchers at Pediatric Bioscience pioneers in the research of autism.  This would be the first, reliable test that involves testing the biology related to autism, and Pediatric Bioscience plans to make the test available to the market later this year after a broad, blind study is conducted this spring.  

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The Unbreakable Boy: A Story of Courage Through Adversity

the unbreakable boy

One of the most difficult things about living with autism is that many people simply do not understand what it is like.

People see the word “autism,” and they veer away, frightened by its controversial and sometimes saddening connotation. In his new book, “The Unbreakable Boy: a Father’s Fear, a Son’s Courage, and a Story of Unconditional Love,” parent Scott LeRette strives to overturn this tendency by sharing the story of his life with Austin, his eighteen-year-old son with autism.

A hallmark feature of autism is disabled emotional cognition, both in terms of its representation in the self and understanding of it in others. Often, this aspect inhibits persons with ASD, and so they appear to be shy and isolated from the world around them. Such is not the case for Austin. In a recent book-signing event in Des Moines, Austin wandered the aisles of the store, introducing himself to people and sparking conversations with strangers.

His father describes his affinity towards people in an interview with USA Today, where he states: “Austin doesn’t care if you are a four-star general or a friend from school or the guy standing behind him at McDonald’s, the guy living under a bridge, or the king of a country. He loves you no matter who you are or what you do. He’s different from anyone I’ve ever met. His life touches everyone he meets. And he doesn’t even know it.”

In addition to living with ASD, Austin also suffers from a painful bone disease called osteogenesis imperfecta, which causes fractures throughout his entire body. He is frank and open about his struggles; it does not make the teenager uncomfortable when people read about them in the book.

“I’m not uncomfortable about my dad writing the book at all. I’m proud of him,” Austin said in the interview. “I want people to understand what it’s like to have autism.”

Though Austin’s sunny personality is certainly a wonderful facet, Scott does not stray from discussing the downfalls that his son’s condition has had on their family. For every loving moment, there has been an unbreakable tantrum, the possibility of physical injury, and, once, a stay at a psychiatric unit.

The LeRette’s will not be the last family to acknowledge the dangers autism can reap on an individual and their surrounding social support; however, they will be one of the first to extol the unique quality its given their family life. In their memoir, they hope to educate the public about the ups-and-downs of their experiences with autism and share the inspiring love they have for their son.

 Sara Power, Fordham University

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Lack of Neural Protein May be Linked to Autism

infant brain autism

A recently published study from Duke University holds interesting implications about the root of autism.

As of right now, the causes of autism are hotly debated. As the diagnoses increase at an abnormally high rate, parents are wondering if there are any preventative steps they can take to minimize autism risk. An in-depth understanding of the genetics behind ASD may unlock the answer.

Many theories have been discussed, and researchers often point towards environmental factors. However, in this recent study, researchers at Duke believe that a disruption in infants’ brain development may be the primary source of neurocognitive deficiencies seen in persons with ASD.

In this study, researchers focused on the role that protrusions on the synapses may have on brain development. Previously, professionals believed that all individuals, whether typically or abnormally developing, began with single synapses. However, in studying mice that miss the code for developing a protein called hevin, they have realized that these subjects actually receive multiple inputs via the synapse rather than just one. As their brains continue to mature, these neurons prune themselves so that they only receive one of these inputs. In depleting these inputs, researchers believe that the coding for hevin may be lost.

This study is significant because a deficiency in hevin proteins (seen in the rats) has also been found in individuals with autism. Some researchers believe that this molecular disturbance may be one of the contributing factors to the development of autism.

If the research at Duke proves to be consistent, researchers may be one step closer to identifying how discrepancies in hevin productions may contribute to the development of autism during infancy. Of course, this is a far cry from developing a concrete causal link, but Duke’s investigation has provided ample fodder for more detailed research that could lead to a better understanding of autism’s development.

Sara Power, Fordham University

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Concerns Arise as Children with Autism Grow Into Adults

autism adult services

Over the past several years, there has been a substantial increase in the number of autism diagnoses. Currently, one in every sixty-eight children is diagnosed with autism spectrum disorder. While there has been much debate in the field of autism research regarding the validity of these diagnoses, experts unanimously agree that the autism population is steadily increasing. Due to the fact that these diagnoses have grown so much over the past several years, a majority of them are still children. However, as time passes and these children age, they reach the brink of adulthood. This brings on a whole host of new challenges, both within the self and the world at large.

Autism is a spectrum disorder, meaning that individuals affected by it can range from very high to very low levels of functioning. For those who are high-functioning, independence can ultimately be achieved through early diagnosis, treatment, and therapy. However, for those persons more severely affected, true independence is unlikely and often full-time care is a necessity. Each state provides Medicaid-funded programs to alleviate the transition into adulthood for both minimally and severely affected children. However, as the number of diagnoses increases but the availability of such resources remains the same, America has witnessed a growing struggle within the autism community to provide adequate care for all those who need it.

To combat this issue of supply and demand, President Obama signed the Autism CARES (Collaboration, Accountability, Research, Education, and Support) Act in 2014, which will provide $1.3 billion over the next five years to fund autism research. This research will help detect the gaps in adult programs for persons with autism, as they transition out of children’s programs.

The goal, according to the bill’s co-sponsor Chris Smith, is that federal agencies will “study and report back to Congress on the special needs of autistic young adults and transitioning youth. In light of the severity of the aging-out crisis, we must do more – and fast – and ensure we are providing a comprehensive and thorough review of available services, and those we need to create.”

In the meantime, officials stress the importance of early intervention. With the help of a recent federal mandate, children who are diagnosed before the age of 3 will be granted access to state programs regardless of parents’ health insurance. Researchers hope that such programs could decrease the long-term severity by implementing treatment at the earliest stage possible.

The federal government has a long way to go before they are able to sufficiently supply the autism community with the resources it needs for adults. With the implementation of Obama’s bill, experts remain optimistic that this discrepancy can be overcome soon. Because this piece of legislation not only provides care for older persons on the spectrum, but also researches the efficacy of these programs, there is a strong chance that the Autism CARE Act of 2014 will increase the success rates of intervention programs, subsequently decreasing the severity of individuals’ disabilities.

Sara Power, Fordham University

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Family-Owned Nonprofit Works with Businesses to Accommodate Families

USAutism Flag

A nonprofit organization based in Texas is working to bring autism awareness to all sorts of companies.

Hunters Autism Specials was created by the parents of an 8 year old boy named Hunter who has Autism Spectrum Disorder. It all began when the devoted parents searched high and low for a flag to hang outside their home, showing support for autism awareness. Many patriotic residents in the U.S. enjoy hanging their country’s flag outside of their home, or one that declares their favorite sports team. So why not have a banner declaring a cause you support too?

When Hunter’s parents could not find this sort of flag anywhere, they decided to create their own. This was the beginning of Hunters Autism Specials, which now has a website where you can purchase your very own “U.S.A.utism” flag. A portion of the proceeds help fund autism research.

The other central tenant of the nonprofit is to connect families with autistic children to businesses that support the cause. Through Hunters Autism Specials, families have access to special services and discounts offered by their partners. Their partners include Top Golf, Dallas Hockey Club, and Oasis at Cedar Creek Lake. Coupons are available to families with children on the autistic spectrum, like one that offers a free appetizer or dessert from Rockfish Seafood Grill.

Hunters Autism Specials also provides reviews for businesses and rates them on autism friendliness. It is their aim to make families aware of businesses that will help make their next outing as fun and stress-free as possible through special accommodations. In their most recent review, the website praises Durkin’s Pizza for waiving their “no outside food” rule, allowing families with autistic children to accommodate their dietary needs.

Included on the Hunter’s Autism Special website is a blog documenting the organization’s progress, including stories about Hunter’s progress, tips for families affected by asd and inspiration for the tough times. A shop is currently under construction as well.

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Relationship Development Intervention Therapy Introduced in India

Letters

There is no denying that autism can make life more complex. If you are affected by it there is no doubt you have tried or have a desire to try many avenues to help your loved one. Here’s an acronym that may be worth a second look: RDI.

Relationship Development Intervention is an emerging therapy that focuses on parent- child interaction. The foundation of RDI is the importance placed on dynamic intelligence. This therapy has reached the Indian subcontinent where it was reported in their Times. RDI has only just been made available to Indian children in the city of Bhopal.

Currently, only 3 therapists are licensed to practice RDI in India. Certified RDI consultant Rashmi Dutta will be curating a three-part workshop series in Bhopal which will be open to 10 parents. Their observations will be sent to Houston, Texas, where designed programs will be sent back to help the program take off in India.

RDI, although less well known than some other treatments, such as Applied Behavioral Analysis, seems better known in the United States than in India; here the rate of autism is reportedly much higher, at 1 in 68 births in the US compared to a diagnosis of 1 in 250 in India. Citizens of the US have better access to RDI, along with with so many options available here to suit the needs of an autistic child. Every person with the condition has different strengths and areas where growth is more important.

Struggling with applying academic skills into valuable job skills is something that could effect anyone, but this is an especially common problem in those with ASD. If children with autism want to lead an independent life, they must learn to translate their textbook knowledge into real- world skills. These applied skills are what are terms a person’s dynamic intelligence. Strengthening these weaknesses is the focus of RDI.

Speaking about introducing the therapy in her community, Dutta told the Times of India, “Speaking to TOI, RDI consultant from Delhi, Rashmi Dutta, said, “For years, parents of autistic children have no alternative but to stick to mundane therapies wherein there are asked to tell their children assemble puzzles or identify colours, irrespective of their IQ levels. They repeat the same pattern year after year without giving any chance to their children to stimulate their brains into exploring new avenues. RDI therapy will work on the overall personality of the autistic child and help parents bring out the best in them.””

The increasing incidence of autism affects many of us each day. It is difficult for even college educated people without autism to apply what they learned in classrooms in a work setting when necessary. For example, someone can read many books about how to use a computer and know all about the CPU and software it needs but will continue to struggle if their typing skills lag behind. Similarly, your child may know how to be cordial, but their way of addressing others in school might not be appropriate in all situations.

Schools and most therapeutic programs teach us that we each have academic strengths, but application is key. You might find that your loved one is proficient in the areas of dynamic intelligence, but if you think they are behind, it is worth a look.

Melanie L Reach

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National Study will Monitor Children With Autism, Focusing on a Better Treatment Plan

8 year olds with autism

A federally funded project will seek researchers from several universities to study prevalence of autism among 4 and 8 year olds. The study hopes to procure accurate data on how widespread autism is in the U.S.

Over the next four years, children residing in more than 10 sites within the United States will be studied this announcement was made by the Centers for Disease Control (CDC) on Wednesday. It is projected that over $20 million will be allocated for this research. Special attention will be paid to autism prevalence in different parts of the country.

One of the participating institutions will be the University of Minnesota, who will be building on research from 2013. The previous study published by Minnesota observed autism at rates of 1 in 36 white children, and 1 in 32 for Somali children in Minneapolis. These rates were notably higher than the national average, and those of other demographic populations in the Minneapolis area. The university’s new study will examine children with both ASD and intellectual disabilities, since those two categories are distinct.

Children will be monitored under the new diagnostic criteria from the latest edition of the Diagnostic and Statistical Manual of Mental Disorders. Under the new guidelines, children who previously fell under the autism diagnosis are now classified as having Social Communication Disorder (SCD).

Since developmental disorders are commonly misunderstood, correct autism diagnosis is a focus of this study. Some children are misdiagnosed as autistic, while others actually are affected by autism spectrum disorder are wrongly given the diagnosis of SCD. It is determined that children with SCD do not meet the criteria for ASD.

Under federal guidelines, SCD is loosely defined and treatment plans for it lack a formal structure. After this diagnostic change was made, parents began complaining that their children were losing the behavioral therapy and special education services granted to them under an ASD diagnosis once they were reclassified as having SCD.

Rutgers, another university participating in the study, belongs to the Autism and Developmental Disabilities Monitoring (ADDM) Network. This organization works to monitor the number of children living with autism in the U.S. The CDCs new study will continue this work already underway by Rutgers.

U.S. Rep. Frank Pallone, D-N.J. hopes that the study will lead people to address autism as a public health concern. In the past, Pallone has spoken out against budget cuts to autism and special needs research. It is estimated in the state of New Jersey, up to 1 in 45 children have autism.

Receiving the correct diagnosis for a development disorder is crucial to receiving effective treatment. At the conclusion of the CDC’s study, the researchers hope that federal agencies will have a better set of plans in place to address developmental disorders and intellectual disabilities.

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