Emma Zurcher-Long Inspires at ICare4Autism Conference

Ariane Zurcher & Emma Zurcher-Long at ICare4Autism Conference

Ariane Zurcher, popular blogger and writer for the Huffington Post, along with her daughter Emma Zurcher-Long sat down to have a very intimate talk with the audience on Wednesday for Day 3 of the ICare4Autism International Autism Conference. Their presentation … Continue reading

Collaboration Creates Positive Change for Children With ASD

autism-puzzle

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 … 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

Learning Digital Skills

autism expressed

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 … Continue reading

Supreme Court Moves Away from ‘Mental Retardation’ Terminology

Recently the Supreme Court struck down Florida’s strict IQ cutoff for determining a convict’s eligibility for the death penalty. In this 5-4 ruling, the court decided that their cut off of 70 “disregards established medical practice” and creates “unacceptable risk” that a convicted person with an intellectual disability might be executed in violation of the constitution. They proposed that Florida follows other states’ examples by taking other factors into account apart from IQ in order to test for intellectual disability.

The case ruling also marked a milestone in the efforts to put an end to the use of the term “mental retardation” as the court, for the first time ever, used the term intellectual disability in its decision. Back in 2010, Obama signed what was called Rosa’s law, which requires that the federal government replace the term “mental retardation” with “intellectual disability especially in federal health, education, and labor policy. However, changing terminology in the political arena is a slow process. The Supreme Court’s decision to acknowledge the new terminology marks one of the last few major national institutions to adopt this “new language.”

“Getting the name change in the eyes of the court is kind of the last step in a 25 year process to affirm the dignity of people with intellectual disability,” says Peter Berns, CEO of The Arc, a grassroots organization that has been lobbying for this change along with many other advocacy groups.

Now that the Supreme Court has really clarified its stance on intellectual disability, perhaps we can really start making a move away from the outdated “mental retardation” which carries a heavier and much more negative connotation about those with disabilities. Changing the way we label someone can really influence the way we approach them as people as well as approach the obstacles that they face. The Court’s decision serves as an uplifting milestone in the disability community, especially for people with autism. 

Advocacy groups and self-advocates play an important role in the lives of those within the autism community. Self advocates, Stephen Shore and Ari Ne’eman are great public speakers, despite being on the spectrum themselves, who will be presenting with self-advocacy at our upcoming International Autism Conference. Click here for more info!

Can Solitary Mammals Help Us Learn About Autism?

There is still so much that we do not know about autism spectrum disorder—from why it has increased in prevalence in the past decade to how to treat those who are affected.  Autism is defined as, “a neural disorder characterized by poor social interaction, problems in verbal and non-verbal communication, and restrictive, repetitive behavior.” Using these common characteristics seen in people on the spectrum, researchers are now looking into studying solitary mammals as a means to better understand the disorder. 

A recently published article in the Journal of Comparative Psychology argues that certain mammals exhibit similar behavior to that typically seen from people with autism. Some of these mammals include polar bears, opossums, skunks, tigers, cougars, and orangutans. Though many of them do have some social behavior they tend to function more independently. According to researcher Jared Edward Reser, both people on the spectrum and solitary mammals have a smaller need for attachment and bonding behaviors, lower stress from separation, and less expressiveness. Biologically the two groups are also similar in that they both produce lower level of oxytocin and vasopressin, which are two hormones that play a large role in social bonding and feelings of attachment. For example, oxytocin is released into the body during positive social interaction, which is responsible for the feelings of closeness we experience with others.

A previous study that used oxytocin injections on adults with autism had results that showed an increase in eye contact, prosocial behavior, and reduced fear/anxiety in social situations. Although much more research is still needed to determine whether oxytocin has a place in treating autism, it does have potentially promising results especially for treatment of more severe cases.

Using this comparative research can be controversial, though researchers acknowledge that only a certain autistic behaviors can be studied and explained by using these comparisons. Autism involves a variety of symptoms and no single animal model could possibly be enough to understand autistic individuals, but it can provide new insight and points for research. Reser points out that it may give us new perspectives on how we look at autistic behavior. “Are the different behaviors we label as being autistic necessarily pathological or are there advantages involved, especially in modern society?” Many scientists as well as autism advocacy groups realize that autistic people can be very successful, especially in fields such as computer programming, mathematics, and physics, therefore continuing to treat them as mentally ill can be counterproductive to our society.

Helping children with autism by providing them with therapy and specific attention to their needs has been a successful and alternative form of “treatment”. So by studying these solitary animals, perhaps we can gain insight into the biology of social interaction, “we can also recognize the need to accept that humans vary widely in terms of how they deal with others.” Dr Eric Hollander,chairman of ICare4Autism Advisory Council, professor of psychiatry and behavioral sciences at Albert Einstein and Director of the ASD Program at Montefiore Medical Center does similar research especially with studying social attachment and the biology behind social interaction as it relates to ASD. He is committed to finding best practices that will help advance the lives of children and adults who are on the spectrum. In an interview with Medscape he says, “Studying autism is really a great opportunity because if you understand what goes wrong in autism, you understand a little bit more about what makes people human. It gives you insight into issues around being able to see things from other people’s perspectives and issues around social attachment, which are really what makes us human.”

Dr. Hollander has been listed in NY Magazine and Castle Connolly’s as one of the “Best Doctors in America” and has done several interviews for the New York Times, the Today Show, and Dateline NBC. He will be giving the opening remarks at our upcoming International Autism Conference as well as presenting on Day 2, which focuses on biomedical research and new developments in autism treatments. For the opportunity to hear him speak, get more information and register for the conference HERE! 

For original article, 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!

Air Pollution Has Potential Links to Autism

Enlargement of part of the brain that is seen in humans who have autism and schizophrenia. Credit: Image courtesy of University of Rochester Medical Center

A new study conducted by the university of Rochester Medical Center and published in the journal Environmental Health Perspectives examines how exposure to air pollution early in life can have harmful effects on the development of the brain, including an enlargement in a part of the brain that is the same in humans with autism and schizophrenia. These findings are consistent with some other recent studies that have linked air quality and autism in children. The 2013 study in JAMA Psychiatry concluded that children who lived in areas with high levels of car related air pollution, especially during the first three years of their life were three times more likely to develop autism as well as other neurodevelopmental disorders.

Cory-Slechta, lead author the study and her colleagues exposed mice to different levels of air pollution that is usually found in mid-sized cities in the US during rush hour. In three sets of experiments, they exposed the mice to the air two weeks after their birth, which is a critical time for brain development, for four hours each day for two four-day periods.Similarly in humans, the male mice were most affected. Consequently, autism is also more prevalent in boys.

In one group where the mice were examined after 24 hours of final exposure, there was clearly inflammation in parts of the brain, which were enlarged up to two to three times their normal sizes. The white matter of their brains that should have developed in those enlarged areas seemed to have very stunted growth. These same problems were observed in a second group of mice 40 days after final exposure and again 270 days after exposure, showing that the brain damage was permanent.

Air pollution is typically composed of carbon particles that are produced by cars, factories, and power plants. However, different sized particles can produce different effects in the lungs and in the body. The larger particles that are regulated by the Environmental Protection Agency (EPA) are actually the least harmful because they tend to be coughed and expelled naturally from our bodies.  Whereas the ultrafine particles that are not regulated by the EPA, can be more dangerous as they are small enough to be absorbed into the bloodstream and create toxic effects on the body. 

Professor of Environmental Medicine at the University of Rochester, Cory Slechta says, “I think these findings are going to raise new questions about whether the current regulatory standards for air quality are sufficient to protect our children.”

ICare4Autism will host its annual International Autism Conference this June 30th through July 2nd and will be dedicating an entire day to presentations and workshops on new research, new drug developments, and scientific advances in the autism community. To keep up to date with everything in autism research, register now by clicking HERE!

To read the original article about the study, 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 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!

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