April 2014



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Archive for April 11th, 2014

Jeff Krull, 24, and his mother, Nancy Stanley Van Dyke, both of Moneta, VA were photographed April 2 at Mercyhurst University in Erie. Krull is a sophomore graphic design major and is part of the Asperger Initiative at Mercyhurst, a program that offers a variety of support for students with autism spectrum disorders. MAGGIE PORTZLINE//ERIE TIMES-NEWS


Published: April 6, 2014 12:01 AM EST
Updated: April 5, 2014 7:58 PM EST


By ERICA ERWIN, Erie Times-News


On the theater stage, he shone.


He could become anybody, brash and bold, comfortable in his character’s skin. His delivery and timing? Perfect. It was easy to act like someone else.


Offstage, in real life, is where Jeff Krull’s challenges became apparent.


Diagnosed with Asperger’s syndrome, an autism spectrum disorder, Krull is intelligent — he was a good student in high school and earned a scholarship to a prestigious North Carolina university — but he sometimes struggles in social situations.


After not finding the support he needed at the North Carolina school, Krull eventually found his way to Mercyhurst University and A.I.M. — the Asperger Initiative at Mercyhurst, a unique program designed for students on the autism spectrum who face challenges in executive functioning and social interaction.


Now the 24-year-old is majoring in graphic design with a newfound sense of purpose and confidence. He recently was honored as the A.I.M. program’s most outstanding sophomore during a recognition event, part of the university’s celebration of Autism Awareness Month.


“I feel like I have people in my corner now,” Krull said. “I feel like I can accomplish getting a degree.”


Launched in 2008-09, the A.I.M. program promotes the development of self-advocacy and independent living skills to help foster academic and social growth in students. Recently released data from the U.S. Centers for Disease Control and Prevention show that the number of children in America diagnosed with an autism spectrum disorder has increased from 1 in 166 in 2000 to 1 in 68 in 2014.


The Mercyhurst program is one of the few tailored to help meet their needs.


“The untapped potential of these individual students is amazing,” said Dianne Rogers, who directs the Learning Differences Program at Mercyhurst and founded A.I.M.


Krull lives with some of the other students in the A.I.M. program in the Mercy Suites. There are socialization opportunities. And he meets weekly with A.I.M. program staff.


“It’s not like you can go off the grid,” said Krull’s mother, Nancy Stanley Van Dyke. “Everyone knows if you’re having a problem.”


The structure and support have helped Krull immensely, Van Dyke said. Watching him thrive over the past two years has been rewarding, she said.


“He’s been happy. He has goals, and he’s achieving them. He has aspirations,” Van Dyke said. “As a mother, what more can you want?


Read in Full:






POTSDAM – Stephen Shore, a professor with autism, will deliver this week’s lecture in Clarkson University’s David A. Walsh ‘67 Arts & Sciences Seminar Series at noon Wednesday in the Clarkson University Student Center Multi-Purpose Rooms.


Shore will deliver a presentation titled “Life on and Slightly to the Right of the Autism Spectrum: An Inside View to Success,” an autobiographical journey from the nonverbal days in which he relates his life to the many challenges facing people on the autism spectrum. Shore is an assistant professor in the Department Of Education at Adelphi University.


Diagnosed with “Atypical Development and strong autistic tendencies” and “too sick” for outpatient treatment, Shore was recommended for institutionalization. Nonverbal until four, and with much support from his parents, teachers, wife, and others, Shore is now a professor at Adelphi University, where his research focuses on matching best practice to the needs of people with autism.


In addition to working with children and talking about life on the autism spectrum, Shore presents and consults internationally on adult issues pertinent to education, relationships, employment, advocacy, and disclosure as discussed in his books Beyond the Wall: Personal Experiences with Autism and Asperger Syndrome, Ask and Tell: Self-advocacy and Disclosure for People on the Autism Spectrum, the critically acclaimed Understanding Autism for Dummies, and the newly released DVD Living along the Autism Spectrum: “What it means to have Autism or Asperger Syndrome.”


President emeritus of the Asperger’s Association of New England and former board member of the Autism Society, Shore serves on the boards of the Asperger Syndrome and High Functioning Autism Association, the Autism Services Association, and other autism related organizations.


Join Shore in his autobiographical journey from the nonverbal days as he relates his life to the many challenges facing people on the autism spectrum.


Read in Full:


I live with autism and I’m grateful

Daniel Giles is a member of the Autism Future Leaders program. Source: Supplied


LET me tell you a bit about my life. I was diagnosed with autism when I was two-and-a-half years old. As a child, I had severe language delays and felt as if I was living behind a glass wall, as if my life was like a video that I starred in, but I had no control over.


My severe communication delay (as well as appearing to have an intellectual disability) meant I attended the Bendigo Special Developmental School for much of my primary school years.


But I graduated from there in grade 5 and attended the mainstream primary school. With the amazing support of my integration aide, teachers and family (who all wanted me to reach my full potential), I completed my secondary education through to year 12 before completing my Bachelor of Graphic Design (with Honours) at La Trobe University in Bendigo.


I now live independently and work as a freelance graphic designer, as well as working part-time as an in-house graphic designer and photographer for a local business in Bendigo.


I believe that what I have achieved shows what can be done when people living with autism are able to reach their potential. And that’s why Thursday’s official launch in Canberra of the world’s first Autism Co-operative Research Centre is so important.


Autism CRC is the world’s first national co-operative research program for Autism Spectrum Disorders. Government, universities, research centres and not-for-profit organisations will work towards solutions for people living with what is a complex and challenging condition.


How complex and how challenging? I am so grateful for my life but it is difficult sometimes. I have high anxiety levels while navigating the world around me, and that has impacted on my ability to manage clients. I’m also stressed easily by changes of plans, a busy environment or an overload of information.


So I’d like to see research done on what would benefit those of us on the autism spectrum, including research into educating people on the spectrum and preparing for transition and independent living. I’d also like to see research on helping with the management of meltdowns, providing quiet spaces in public venues and on business owners being better able to communicate with people on the spectrum.


I believe researching how employers could cater to the needs of people with autism should also be a high priority.


My biggest hope, though, is that the Autism CRC avoids research that focuses on eugenics and any potential of eliminating people with autism. Instead, it should be focusing on helping people on the spectrum become the best they can possibly be.


That is relevant given that autism can now be detected at one year of age or earlier, once the genetic code is identified, and that future research may lead to the prenatal identification of autism.


Read in Full:


Dane Spurrell with his mother, Diane Spurrell. — Telegram file photo


RNC officers breached regulations in Dane Spurrell case, ruling states


Two Royal Newfoundland Constabulary officers breached multiple RNC regulations when they arrested and detained an autistic teenager in 2009, according to an adjudicator’s decision released Mon­day.


Diane Spurrell filed the original complaint with the RNC Public Complaints Commission following the arrest of her then 18-year-old son, Dane, in Mount Pearl. He was accused of obstructing police officers, who mistakenly thought he was publicly intoxicated while walking home from a video store shortly after midnight on April 19, 2009.


Almost five years later, adjudicator John McGrath has found the two officers involved in the arrest guilty of breaching multiple RNC regulations.


“I think it’s a very fair decision,” Diane Spurrell told The Telegram Monday, the same day she received her copy of the decision. “I’m elated, absolutely elated to finally have it.”


Const. Lisa Harris — formerly known as Lisa Puddicombe — was the first officer to come in contact with Dane Spurrell that night. McGrath found her guilty of breaching five regulations.


Those breaches are for arresting and detaining Spurrell without sufficient cause, being discourteous towards him, neglecting to promptly and diligently perform officer duties, acting contrary to the RNC policy and procedures manual, and failing to obey RNC regulations, orders and rules concerning policy and procedure.


“We believe in this instance it wasn’t (Spurrell’s) ability to communicate that caused a lot of the problems herein,” McGrath wrote in the decision, “it was a combination of Constable Harris’ frustration believing she was being outwitted by Dane Spurrell, her failure to follow the RNC Policy and Procedures Manual and a significant lack of understanding of the provisions in that manual and ultimately her failure to allow a simple phone call to and with his mother that would have put a stop to the unnecessary turmoil that followed.”


Read in Full:



The Food and Drug Administration (FDA) is considering an important action that would ban the use of devices that use electric shock for behavior modification. This action has the potential to close the Judge Rotenberg Center, an institution in Massachusetts  which uses contingent electric shocks as a method of behavioral control. 


The United Nations Special Rapporteur on Torture has declared the use of electric shock as torture, and the U.S. Department of Justice initiated a civil rights investigation into the JRC’s practices. The JRC’s founder, Matthew Israel, was forced to resign after facing charges for destroying video evidence of abuses of the GED electric shock device. Contrary to the JRC’s claims, not only do students receive electric shocks for relatively minor behaviors such as standing up from a desk or swearing as well as for potentially dangerous behaviors, but severe self-injurious and destructive behaviors can be successfully treated using methods other than abuse and torture. In legislative hearings each year on legislation that would ban the shocks, professionals with expertise in developmental and intellectual disabilities testify about the ineffectiveness of electric shock and the myriad options for addressing problematic behavior other than electric shocking. There are no scientific, peer-reviewed studies that show any long-term efficacy of electric shock as a treatment, but there are documented cases of former JRC students receiving diagnoses of post-traumatic stress disorder after leaving the JRC.

We need to assure the FDA receives as much written testimony as possible regarding this issue. The deadline for submitting statements is this Monday, April 14th.

Your written statement can be any length and can contain any information you want – your opinion about the use of electric shock for behavior modification, other ways of supporting people who have dangerous or difficult behaviors, issues of ethics and rights, research, etc. All comments are important and welcome.

Comments can be received on or before April 14th, and can be submitted electronically by April 14th here.

Click on the link above and you will receive a form. You can type (or copy and paste) your statement there or upload a document. You can choose to give contact information or to submit anonymously.

Your statement must be received by April 14th.


There are millions of Americans with disabilities lacking adequate health care because of a lack of primary care providers who are properly trained to treat them. In 2000, Healthy People 2010 cautioned that “as a potentially underserved group, people with disabilities would be expected to experience disadvantages in health and well-being compared with the general population.” Unfortunately, that statement continues to be correct. In particular, people with intellectual and developmental disabilities (I/DD) remain subject to significant health care disparities.


Right now, people with ID/DD are not included in the federal government’s definition of Medically Underserved Populations (MUP). That is why it is very important that awareness of this issue be spread so that the Health Resources Services Administration can take action to include people with ID/DD in the MUP definition. Failing that, Congress should act to ensure this community’s inclusion in the official definition. By including people with I/DD in the federal definition of a Medically Underserved Population, people with intellectual and developmental disabilities will have access to better quality health care and better quality of life.


For more information, you can read ASAN’s policy brief here.


Thanks to generous support from:

Logo for the Special Hope Foundation