Tristram Smith

Autism Light #468 is Tristram Smith.

Tristram H. Smith, Ph.D., BCBA, was a leader in the field of evidence-based research as a treatment for autism. He had been serving at the University of Rochester Medical Center (URMC) since 2000 and at the time of his passing was the URMC's Haggerty-Friedman Professor in Developmental/Behavioral Pediatric Research. He was born on April 9, 1961, and passed away on August 8, 2018, at the age of 57, from a heart attack. He is survived by his wife Jennifer Katz and two children, Jonah Smith and Madeleine Katz. His funeral service was held on August 10, 2018, at the Anthony Funeral Chapel in Brighton, New York (Read more at Anthony Funeral Chapel Obituary for Tristram Smith). Tristram Smith will be placed on the Autism Light Memorial Roll today.

Some heartbreaking news to share: Our very own Dr. Tristram Smith, whose research into Autism Spectrum Disorder changed the way that children are clinically treated, passed away this week. He was 57 years old. Please keep his family in your thoughts.https://t.co/Rd1ibiqI3z pic.twitter.com/WP6thq7jNL

— Golisano Children's Hospital (@URMed_GCH) August 9, 2018

Alison Singer, president of the Autism Science Foundation, said of Tristram Smith, "For autism families, he was a hero. His research was groundbreaking, of course, but he also pushed for increased access to autism services and lobbied for legislative changes. It's unusual to see scientists also act as advocates, but Tris went far beyond what most clinician-researchers do (As quoted by University of Rochester Medical Center News, August 8, 2018).

Other Tributes: The Association for Science in Autism Treatment published several noteworthy tributes to Tristram Smith after his untimely death. You can read them in the article Tributes to Dr. Tristram Smith.

In April 2018, the Autism Partnership Foundation gave Tristram Smith the Lifetime Achievement Award. Here is the video of the presentation of the award.




Author: Tristram Smith published the book Making Inclusion Work for Students with Autism Spectrum Disorders: An Evidence-Based Guide in 2011. It is available on Amazon.com.

Tristram Smith passed away just days after giving this presentation at the UC Davis Mind Institute on August 3, 2018.



We remember Tristram Smith for his efforts to advance the field of evidence-based research for autism treatment. It is our hope that his life and research will be a foundation to inspire others to enter the field of autism research to continue the advancements for future generations. Our thoughts are with the family he leaves behind.

Autism Light honors diverse heroes to the world of autism.

Michael Hannon

Autism Light #444 is Dr. Michael Hannon.

"Faith is taking the first step, even when you don't see the whole staircase." 

    (Dr. Martin Luther King, Jr, The King Center)

When autism parents commence on the journey of raising a child with an autism spectrum disorder, they are put in a position, like Dr. King says, of needing to work and love their child persistently without being able to see all the growth and success their child with autism will experience over time. I believe if Dr. King were living today he would have acknowledged the unique challenges autism families face, and would have been especially engaged with how autism impacts families in the African-American community. King would have been very supportive of research into finding out the influences of autism on diverse family systems and would have been publically grateful for the efforts of the following autism father and researcher who is being honored for Martin Luther King, Jr. Day in 2016.

Dr. Michael Hannon is a professor and autism father from Westampton, New Jersey. He and his wife LaChan Hannon have a 13 year-old daughter Nile and an 11 year-old son Avery. Avery has a form of autism. Dr. Michael Hannon is an Autism Light for his research into the potential rewards of fathering a child with autism within diverse communities.

Dr. Michael Hannon serves as the Assistant Professor of Counselor Education at Montclair State University, where his primary responsibility is teaching in the graduate level counseling program. He also serves as a mentor to doctoral students in their counseling doctorate program. Dr. Michael Hannon conducts research related to mental health and counseling and his research specialty is the influence of autism on broader family systems and fathers, with a particular emphasis on fathers and families of color. His website shows a summary of his previous work experience.

Legacy of Dr. Martin Luther King, Jr. (MLK): Dr. Michael Hannon told Autism Light that MLK influenced his work in this way.

Dr. Martin Luther King devoted his life, and particularly the latter part of his life, to an unapologetic fight for social justice. He was courageous to speak out and fight against racial discrimination, socioeconomic disparities, and war in revolutionary ways. His legacy influences my work in being able to share stories and experiences of an understudied and often misunderstood community: Black fathers of individuals with autism. There is important research about how autism affects family systems that includes highlighting disparities in diagnosis timing and access to care between racial/ethnic groups in the United States. While raising children with autism and other developmental differences can be challenging at times, the challenges might be exacerbated when we study the experiences of diverse parents. These exacerbated challenges may be based, in part, by negative interactions with service providers (e.g., teachers, therapists, etc.) that undermine trust between parents and service providers (Michael Hannon, January 13, 2016).

Education: Dr. Michael Hannon has completed the following educational degree programs.

• Ph.D. (2013), Penn State University, Counselor Education & Supervision
• Ed.S. (2010), Rider University, School Counseling Services
• M.Ed. (2000), University of Delaware
• B.S. (1998), University of Delaware

Author: Dr. Michael Hannon has been the author or co-author of over 25 presentations, book chapters, and/or articles on the area of his expertise in counseling, mental health, and autism families.

• Michael Hannon's Ph.D. dissertation was Just Love Him and Everything Else Will Fall Into Place: An Analysis of Narratives of African-American Fathers of Children with Autism Spectrum Disorders (read or download the paper from an online library collection at the link provided). This became the first empirical study to capture and communicate the narratives of African-American fathers of children with ASDs specifically for counselors and counselor educators.
• Another practical research paper by Dr. Hannon is online called Supporting Siblings of Children with Disabilities in the School Setting: Implications and Considerations for School Counselors.

Highlights of Research Findings: Some recurring messages that Dr. Michael Hannon has heard from fathers in his research include:

• The most rewarding aspect of fathering individuals with autism is seeing their children successful.  
• There is an orientation and adjustment process that fathers experience as they learn about their children’s autism diagnosis and possibly have to adjust their relationship expectations with their children with autism.  
• Fathers seem to appreciate connecting with resembling fathers and families as they navigate fathering an individual with autism. 
• Fathers are paying close attention to their different forms of capital (Dr. Michael Hannon, January 13, 2016)

Certifications: Dr. Michael Hannon is a National Certified Counselor (NCC) and a Licensed Associate Counselor (LAC) in New Jersey.

Awards: Dr. Michael Hannon received the Presidential Award by the Willingboro, New Jersey and Vicinity Branch of the NAACP in November 2015.
  
Conference Speaker: Dr. Michael Hannon provided the keynote at the 3rd Annual Conference for New Jersey Fathers of Children with Special Needs in October of 2015. Below is a brief excerpt of his presentation. More information on past conferences he presented at are listed on his blog.

Great Expectations Teaching & Advocacy Center for Childhood Disabilities, Inc. (GETAC): Michael and LaChan Hannnon founded GETAC on April 19, 2007 to offer advocacy, educational, and consultative services for parents raising children with developmental disabilities. Michael's wife, LaChan Hannon, serves as the Executive Director and the work of this non-profit is dear and near to them.

The following is a video of Google Hangout where Dr. Michael Hannon was on an online panel called Autism Brainstorm: Guy Talk that Dr. Robert Naseef did in March 2015 as part of a feature on an African-American perspective on raising children with autism. A second part of this series was taped in April 2015.

Advice to Autism Fathers: Dr. Michael Hannon shared this advice to autism fathers with Autism Light. 

"Fathers are important members of the family. When families have experiences that require something new or unexpected from them, it can be a source of both stress and enrichment. As they navigate this experience, I encourage fathers of children with autism to:

• Learn (more) about themselves so they can engage with their families in healthy and honest ways. Discover (or rediscover) interests, hobbies, stress relief activities, and ways to support personal growth and development.
• Learn about their children (with or without autism) so they can find connection points. Fathers may find they share interests, attitudes, dispositions with their children, which is awesome. They also may discover something their children enjoy that eventually becomes a mutual interest or something in which they entirely support their children.
• Learn about autism by talking to trustworthy people who help build a sense of community. These can be other dads, romantic/marital partners, specialists and therapists, school personnel, and/or a faith community (if applicable). (Michael Hannon, January 13, 2016)."

---

"Life's most persistent and urgent question is, 'What are you doing for others?'".

(Dr. Martin Luther King, Jr.,The King Center)

---

Others Supporting Autism Families: Dr. Michael Hannon provided this insight to Autism Light on supporting fathers in diverse communities.

I appreciate the ongoing advocacy for individuals with autism by individuals with autism, their families, and concerned community members and groups. One way we can all continue to help families affected by autism is being courageous in helping eliminate the disparities in diagnosis, diagnosis timing, and access to care for families of different racial/ethnic groups. 

Another way to help is to continue balancing the autism narrative. All families experience stress, and raising an individual with autism can be stressful at times, and in different ways than raising an individual who does not have autism. However, the stress/coping narrative is not the only autism story. It’s great to be able to read, hear, and talk to those living with and/or affected by autism when they share their success and reward stories (Dr. Michael Hannon, January 13, 2016).

People-First Language: Dr. Hannon has a specific way in which he speaks about people with autism that affirms their dignity and that they are more than their autism diagnosis. He said this to Autism Light:

One last suggestion for all of us is to affirm the humanity of individuals with autism, by using people-first language. Unless I’m corrected, I try to address people with autism with that moniker: people WITH autism. I get concerned when we label a community by just one identifier, especially when that identifier has been constructed as something negative (e.g., autistic, diabetic, schizophrenic, etc.). Those identifiers can be sources of pride for the individuals living with such conditions and contribute to our diverse communities; however, I err on the side of caution and try to use people-first language in my interactions and recommend others do the same unless told otherwise (Dr. Michael Hannon, January 13, 2016).

Follow Michael Hannon on Social Media: 

• Facebook Page of Michael Hannon
• LinkedIn Profile of Michael Hannon
• Twitter @MDHannon

Special thanks to Dr. Michael Hannon for being an Autism Light and fighting the good fight as an autism father, researcher, and counselor. His work is a benefit to the autism community and he is an appropriate representative of someone who has a passion to shape the world for the better like the great Dr. Martin Luther King, Jr.

This post is our 5th annual feature to honor someone who is an Autism Light in the spirit of Martin Luther King, Jr. Past honorees of Autism Light on Martin Luther King, Jr. day include:

2015

Areva Martin (Autism Mother)

2014

Elijah Winfrey (Autism Uncle)

2013

Joshua Bennett (Autism Brother)

2012

 King Richard (Person with Autism). 

Autism Light honors diverse heroes to the world of autism.

The photo of Martin Luther King, Jr. in this post is in the Creative Commons of 

Wikipedia and is from the National Archives and Records Administration. The photo of Michael Hannon is used with permission of Michael Hannon.

Robin Parker

Autism Light #371 is Robin Parker.

Robin Shari-Rosenthal Parker, of North Lauderdale, Florida, was a professor in the communications sciences and disorders field at Nova Southeastern University. She passed away on July 16, 2014, at the age of 50, from pancreatic cancer. Robin Parker is survived by her husband Glenn, a daughter Sarah, and a son Michael. Also, surviving are her parents Lenore and David Rosenthal. Dr. Robin Parker is an Autism Light for her insights into autism and her decades of providing practical help with the communication needs of people with autism. Robin Parker will be placed on the Autism Light Memorial Roll today.

Education: Robin Parker received her Bachelor and Master's Degree from Florida State University. She earned her doctorate degree in Communication Disorders from Nova Southeastern University.

At the time of her death, Robin Parker was a professor at Nova Southeastern University. In order to improve communication with individuals who have autism, her work also included an interest in a study of effective communication Apps for mobile devices. Wren Newman, the Executive Director at the Speech Pathology program at Nova Southeastern University said,

We'll make sure she is not forgotten. Our students will know about her and her work. She was positive and gave families hope and strategies to implement with their children. In the 30 years I've been in this field, I can't think of a positive descriptor that I couldn't use about Robin (Wren Newman as Quoted in the Miami Herald, July 17, 2014).

Read more here: http://www.miamiherald.com/living/article1975920.html#storylink=cpy

The following is an interview of Dr. Robin Parker on communication conducted by Dr. Cyndy Hayes.

PrAACtical AAC Blog: Robin Parker along with her colleague Dr. Carole Zangari founded the PrAACtical AAC blog to promote supports for language learning in 2012.  Dr. Zangari said, "The blog was a happy place for [Robin]. She was all about helping individuals who can't speak gain a voice (Autism Daily Newscast, July 19, 2014)."

There are many resources available on the PrAACtical AAC blog. Strategies, videos, a tool box, and other material are available for therapists and people that work with autism. The blog also includes several supports to help observe Jewish Disability Awareness Month.

Parent Testimony: Mona Nasser said, "My daughter is an adult now and because of the work Robin did she will be able to manage her life in a meaningful way. I've since had the privilege of calling her one of my best friends and she lived her life like she left it--with dignity, respect and compassion (Mona Nasser as Quoted in the Miami Herald, July 17, 2014)."

The contributions that Dr. Robin Parker made for autism won't soon be forgotten. They have enriched human lives and have ushered in groundbreaking understandings of communications that will be felt in the field of autism for years to come. It is hoped that the legacy of Robin Parker will encourage other people to become experts in communications in order to shine a light for autism. Our thoughts continue to be with her family in their loss.

Autism Light honors diverse heroes to the world of autism.

Adam Feinstein

Autism Light #321 is Dr. Adam Feinstein.

Adam Feinstein is an autism researcher, author, and journalist who lives in London, England in the United Kingdom. Adam Feinstein's 20 year old son Johnny, who has autism, inspired him to enter the field of autism research almost two decades ago. Today Adam Feinstein is a recognized international leader in autism with his influence being felt far beyond his homeland in the United Kingdom. Dr. Adam Feinstein is an Autism Light for being a leading researcher on autism and helping the autism community understand autism through contemporary research and analysis of the history of those who have contributed to the cause of autism.  

The following is a two part interview that Alison Singer of the Autism Science Foundation conducted with Dr. Adam Feinstein at the International Meeting for Autism Research (IMFAR) in 2010. 

 

Autism Cymru: Adam Feinstein works for Wales' National Charity for Autism called Autism Cymru. His duties at Autism Cymru include two very important roles:

• Website Editor: He serves as the editor of the Autism Cymru websites called Awares and Autism Connect. These websites have a vast resource of information on diverse subjects in the field of autism. 
• Conference Organizer: Dr. Adam Feinstein leads an annual international online autism conference for Awares. A unique feature of this conference is that anyone from around the world may pose questions directly to top autism experts who are involved in the conference. Dr. Adam Feinstein said, "More than sixty of the world's leading autism experts --including Simon Baron-Cohen, Gary Mesibov, Donna Williams, Wendy Lawson, Susan Leekam and Susan Folstein--have taken part (Introducing Myself, Adam Feinstein)." 

Newsletter: Dr. Adam Feinstein serves as the editor of an international autism newsletter called Looking Up, which has the latest reasearch and news on autism from around the world. Looking Up is a monthly 40 page newsletter. Looking Up describes their work as, "Aimed at parents and professionals alike, it is a lively and informative mix of the very latest findings in autism resarch from around the world and articles which explore the imapct of autism in all areas (Looking Up Website)."
A History of Autism: Conversation with the Pioneers: In June, 2010, Adam Feinstein published with Wiley-Blackwell a groundbreaking book called A History of Autism: Conversations with the Pioneers. Dame Stephanie Shirley financed the research of the book. The Autism Light blog is very grateful for having been able to reference information in A History of Autism: Conversation with the Pioneers in order to help write some of the Memorial Roll posts on autism heroes of the past who have passed on. 
Dr. Adam Feinstein also speaks on autism around the world and has been featured regularly on the BBC and in the Guardian. If you want to read more about Dr. Adam Feinstein's ongoing work, you can read his blog at http://adamfeinstein.wordpress.com. You can also contact him at the email address of editor@lookingupautism.org
Social Media:  You can follow Adam Feinstein at the following social media areas.

• LinkedIn Account of Adam Feinstein
• Twitter @AdamFeinst

Special thanks to Dr. Adam Feinstein for being an Autism Light. His leadership and writing on autism research is a priceless aid for those charged with putting together pieces of the puzzle of autism. Adam Feinstein's work helps the autism community understand the past and present in order to offer constructive hope for improving the future.  
Autism Light honors diverse heroes to the world of autism.

Ole Ivar Lovaas

Autism Light #255 is Dr. Ole Ivar Lovaas.

 

Dr. Ole Ivar Lovaas was born in Lier, Norway on May 8, 1927. He was a clinical psychologist at UCLA who spent 40 years in autism research and pioneered a treatment for autism known today as the Lovaas treatment. Lovaas is also regarded as the Father of Applied Behavioral Analysis as it applied to people with autism.  Dr. Lovaas passed away on August 2, 2010, in Lancaster, California. Dr. Ole Ivar Lovaas is being named an Autism Light posthumously and added to the Autism Light Memorial Roll because of his contribution to the field of autism treatment.

The New York Times obituary for Dr. Lovaas states that he was "a psychologist who developed one of the most widely used therapies for children with autism, and in doing so helped change the treatment and the public perception of the condition (Source)." The following is an early interview done with Dr. Ivar Lovaas. In addition to it's historical value it provides a background into the approach for treatment used by Dr. Lovaas.


Dr. Jacqui Wynn, a former student of Dr. Lovaas and the director of the Center for Autism Spectrum Disorders at Nationwide Children's Hospital in Columbus, Ohio, gave this tribute to Dr. Ivar Lovaas:

He gave hope and opportunities to children and families who really had no hope or opportunities before him. It was all based on Ivar believing what at the time was thought to be impossible--that these kids could learn and change and lead normal lives. He stuck with that belief doggedly (Source).

Early Life: Dr. Ivar Lovaas worked as a farmer in Norway as a young man during the Nazi occupation of his country.

Education: Dr. Ivar Lovaas earned his undergraduate degree from Luther College in Iowa where he earned a scholarship in music for his skill in playing the violin. He went on to earn his doctorate of psychology from the University of Washington.

Career: Dr. Ivar Lovaas became a Professor of Psychology at UCLA in 1961. At the time of his death he was an Emeritus Professor of Psychology at UCLA.  The Los Angeles Times said, "At UCLA, Lovaas' class, Psychology 170A: Behavior Modification, was among the most popular undergraduate courses. In a booming voice, he entertained students with stories of Norway and played the song "Dust in the Wind" to introduce a lesson on human malleability (Source)."

Research: Dr. Ivar Lovaas was influential in showing that some children with autism could benefit from treatment.  His paper called, Behavioral Treatment and Normal Educational and Intellectual Functioning in Young Autistic Children was important and spreading that message to the autism treatment community.

Quote: Dr. Ivar Lovaas' said regarding research, "If we lose or minimize the importance of peer-reviewed outcome data, we abandon the defining feature of behavioral approaches to social problems (Source)."

Lovaas Institute: In 1995, Dr. Ole Ivar Lovaas founded the Lovaas Institute and they continue to carry on his work today with partners around the United States who utilize the Lovaas approach for autism. The following is the announcement the Lovaas Institute shared about the passing of Dr. Lovaas in 2010.

More information on Ivar Lovaas is available on these many sites who recognized his life accomplishments:

• Memories of Ole Ivar Lovaas at Association for Psychological Science
• Los Angeles Times Obituary
• Medscape Today Article
• New York Times Obituary
• Psychology Today Article on Ivar Lovaas
• Wikipedia Page

Special thanks to Dr. Ivar Lovaas for being an Autism Light. Your work was not in vain and its impact continues to this day to help brighten the lives of children and families with autism.

Autism Light honors diverse heroes to the world of autism.

Photo: The photos of Dr. Lovaas in this post were used with permission of the Lovaas Institute.

Chris and Ivana LePoer

Autism Lights #237 are Chris and Ivana LePoer.

Today's Autism Lights endured a tragedy that no parent should ever have to face. And their constructive response to their loss will potentially be helpful to the future of autism research. Chris and Ivana LePoer are autism parents from Westborough, Massachusetts. Their 4 year old son Alexie LePoer had autism and tragically died from a pool drowning when he wandered away from his apartment on May 13, 2012--Mother's Day. Chris and Ivana LePoer are Autism Lights because after their son's death they quickly donated his brain to the Autism Research Foundation in time for it to be of use for autism research.

After he was diagnosed with autism and before his death, Alexie's parents were engaged in trying to help find answers to the mystery of autism. Chris LePoer said, "If some stranger came into your house and hurt your child, you'd want to know why. It needs to be understood. It needs to be stopped (Source)."

To help make a difference, Chris and Ivana LePoer enrolled in a research study of autism focused on younger siblings, a project overseen in part by Dr. Margaret Bauman at the Lurie Center for Autism in Lexington. After their son Alexie's untimely death they made the ultimate contribution by donating his brain to the Autism Research Foundation.

Sharon Henderson, a friend of the family said, “The family is dedicated and committed to finding answers to this terrible condition that affects so many of our children (Source)."

The Autism Research Foundation stores brains at the Harvard "Brainbank", formerly called the Harvard Brain Tissue Resource Center. Alexie's four year old brain is the youngest ever received by the Autism Research Foundation for study. Note that Alexie LePoer's brain was not part of the group of brains from the Brainbank that were found to have tragically thawed and become damaged on May 31, 2012 (Source).

When Chris LePoer learned that his son's brain was not harmed in the Brainbank's tragic loss of a group of autism brains he said, "It's kind of a mixed bag. I'm just grateful he'll be able to continue to help in this horrible situation (Source)."

Special thanks to Chris and Ivan LePoer for donating their son's brain for autism research. We mourn the loss of this little boy with autism along with his parents, but are appreciative that they had the unselfishness to allow their son to be part of autism research after his death.

Autism Light honors diverse heroes to the world of autism.

Marian DeMyer

Autism Light #216 is Dr. Marian K. DeMyer.

Marian K. DeMyer was born on October 30, 1922 in Greensburg, Indiana. She died on July 15, 2012. She was a pioneer autism researcher and professor emeritus at Indiana University.  Marian K. DeMyer is an Autism Light because of the impact her efforts had to autism research and therapy. She is being named an Autism Light posthumously and will be added to the Autism Light Memorial Roll.

Marian DeMyer's obituary at Legacy.com shares this about her contribution to autism research:

Dr. DeMyer was a research pioneer in Childhood Schizophrenia, later known as Autism. Her research at LaRue Carter Hospital and the Institute of Psychiatric Research at Indiana University provided the ground work for later research by others that identified and defined the spectrum of Autism (Source).

Marian DeMyer is regarded as a pioneer in the use of Applied Behavioral Analysis to work with individuals with autism. The Autism Research Institute tweeted this message about Marian DeMyer's influence on ABA therapy on their Twitter Account in November 2, 2011.

Did you know? Marian DeMyer and Charles Ferster pioneered the use of behavioral strategies with individuals on the spectrum.
— Autism Research Inst (@TreatingASD) November 2, 2011

For more information on ABA read the Autism Light Spotlight #1 on ABA.

Literature: Marian K. DeMyer was a prolific writer of her autism research. The following are some important publications of hers.

• A Comparison of Five Diagnostic Systems: In 1971, Dr. Marian K. DeMyer published an article called A Comparison of Five Systems for Childhood Schizophrenia and Infantile Autism. 
• Parents and Children with Autism: In 1979, Dr. Marian K. DeMyer wote the book Parents and Children with Autism. This was one of the first books for families facing autism.
• Infantile Autism Reviewed: A Decade of Research: In 1981, Dr. Marian K. DeMeyer published an article on A Decade of Research on Autism. The article has been referenced by many other subsequent researchers.

Conversation with Autism Pioneer: Marian DeMyer is mentioned on page 155 in the chapter on the 1970's in Adam Feinstein's important work called A History of Autism: Conversations with the Pioneers. Her 1974 study is mentioned where her research found, "a profound language dysfunction in every autistic child. This language dysfunction was manifest in symbolic aspects, even if the mechanics of speech were present (Source)."


An obituary of Dr. Marian K. DeMyer is available at Legacy.com.  Our thoughts are extended to the family of Marian DeMyer. It is hoped that this tribute to her work will encourage other people to dedicate their life to autism research.

Autism Light honors diverse heroes to the world of autism.

Aaron Shield

Autism Light #204 is Aaron Shield.

Aaron Shield is the Principal Investigator for the Deaf Autism Project at Boston University. In 2010 Aaron Shield earned his Ph.D. in Linguistics from the University of Texas at Austin and he joined the Psychology Department at Boston University in 2011. Aaron Shield is an Autism Light because of the potential that his research on sign language and autism has shown for helping to improve the lives of deaf children on the spectrum.

Hundreds of families in the United States are impacted with the effects of both autism and deafness. While the latest figures are that autism touches 1 in 88 children, the impact on the deaf community is statistically greater. A recent study by Christen Szymanski and colleagues reported that 1 in 59 deaf children in the Gallaudet Research Institute Annual Survey of Deaf and Hard of Hearing Children also carry a diagnosis of an autism spectrum disorder (For Source Information See Journal of Autism and Developmental Disorders, January, 2012).

Autism Light asked Aaron Shield what motivated him to concentrate his research and study on deaf autism. He provided this meaningful explantion to what inspired him.

I was inspired by the fact that there was a total lack of research on these children. I knew that deaf children were receiving autism diagnoses, but no one was studying how these children were learning sign language. There were no diagnostic or screening instruments adapted for signing children. There were no interventions tailored for their specific needs. So it seemed to me that there was a real need for the research. I then met many families, Deaf and hearing parents who were very enthusiastic and encouraging. I realized that they were counting on me.  

From a research point of view, I was fascinated because I think that studying deaf children with autism can teach us about autism in general, because we can literally see the effects of autism in a visual language. It's a different lens through which to view autism, one which can provide us with valuable information about how kids with autism think and process information. 

Aaron Shield says that one of his goals in his research for the Deaf Autism Project is to "help inform the development of strategies for better diagnosis and intervention with deaf children with autism, a population that up until now has received very little scientific attention (Source). The following is a YouTube video where Aaron Shield explains the need and requirements for participation in this research by member of the deaf autism community.


Research Funding:  The Deaf Autism Project research is funded by a three-year grant from the National Institute on Deafness and Other Communication Disorders (NIDCD), one of the National Institutes of Health in the United States (Source). The research is being hosted by the ROADD Center (Research on Autism and Developmental Disorders) at Boston University. The goal for sample size of the study is to include 20 deaf children with autism and compare them to a larger group of about 50 deaf children without autism.

Dissertation: Aaron Shield's dissertation was written on The Signing of Deaf Children With Autism. You can read his complete paper online at this link. Aaron Shield summarizes his methodology, hypothesis, and analysis of his dissertation this way.

In my dissertation, I studied a group of 26 deaf children and adolescents who had been diagnosed with an autism spectrum disorder. In particular, I analyzed the way that they formed their signs. I had hypothesized that the autistic deficit in theory of mind -- the ability to understand the mental states of others -- might lead to specific kinds of errors in sign language. I found that some of the younger children -- all under the age of 10 -- had a tendency to reverse the direction of their signs, so it appeared that they were signing "backward". This seems to suggest that some children with autism learn signs differently from typically-developing deaf children, and may require different kinds of language interventions than hearing, speaking children.

Other Resources: Aaron Shield wanted to pass on to members of the Deaf Autism Community the following three resources that may provide community support unique to both deafness and autism.

• Deaf Autism America (DAA) (Associated with American Society for Deaf Children)
• Yahoo Group (deaf-autism-group)
• Autism Research Institute's Resources for the Deaf/HOH/Blind/Visually Impaired with Autism

Special thanks to Aaron Shield for leading this unique and important research related to autism in the deaf community.  If you are eligible to participate in his research your partnership can be very helpful. For more information on the Deaf Autism Project contact Aaron Shield at aaronshield@gmail.com. You may also view his profile page at the ROADD Center at http://www.bu.edu/deafautism/aaronshield/.

Autism Light honors diverse heroes to the world of autism.

Photo: The photo in this post is used with permission of Aaron Shield.

Dr. Bernard Rimland

Autism Light #90 is Dr. Bernard Rimland.

 

Dr. Bernard Rimland passed away on November 21, 2006. He lived most of his life in San Diego, California. Dr. Rimland was a parent of a child with autism and was one of autism's great heroes of the 20th century. Dr. Bernard Rimland is being named an Autism Light posthumously on this the 5th anniversary of his death. He will also be the third individual to be placed on the Autism Light Memorial Roll.  Dr. Bernard Rimland is an Autism Light because of his contribution to autism through his prolific writing, leadership, speaking, and relentless research. He was specifically a leader in promoting the benefits of biomedical treatments for autism.

Family: Dr. Bernard Rimland was survived by his wife Gloria, and three children (Mark, Paul, and Helen Landalf). Mark Rimland is his oldest son who had one of the earliest diagnosis of early infantile autism and his condition inspired Dr. Bernard Rimland's work with autism.

Katie Burns wrote this documentary on the far reaching effects of Dr. Bernard Rimland's work, particularly as he challenged Bettelheim's theory of Refrigerator Moms causing autism and changed the approach to autism forever.

Leader of Autism Organizations:  Dr. Bernard Rimland was the founder of the Autism Society of America, and he also served as the Executive Director of the Autism Research Institute. Both of these organizations continue to play an important role in the autism community.  On September 28, 2011 Dr. Stephen M. Edelson was named an Autism Light for his work in succeeding Dr. Bernard Rimland as Executive Director of the Autism Research Institute.

Author: Dr. Bernard Rimland was a prolific writer and penned the following books.

• Infantile Autism (1964)
• Modern Therapies (1976)
• Biological Treatments for Autism and PDD (1998)
• Tired - so Tired!: And the "Yeast Connection" (2001)
• Vaccines, Autism and Childhood Disorders (2003)
• Treating Autism (2003) - Written with Dr. Stephen M. Edelson
• Recovering Autistic Children (2006) Second Edition

Quote: One of Dr. Rimland's famous quotes is the following statement.  For years we have heard the experts say that autism is a lifelong disability,...This simply is not true anymore (Source).

Hollywood:  Dr. Bernard Rimland served as a consultant to the 1998 movie Rain Man.  He helped Dustin Hoffman clarify the traits of autism. See http://www.drbilllong.com/Autism/Rainman.html for more information on that role.


You can find out additional information on Dr. Bernard Rimland at the following websites.

• Tributes to Dr. Rimland at Autism Research Institute Website
• Tribute from Autism Society of America
• Tribute on Adventures in Autism Blog
• Wikipedia Page
• New York Times Obituary

Special thanks to Dr. Bernard Rimland for being an Autism Light. Your work was not in vain and its impact continues to this day by those in the autism community.

Autism Light honors diverse heroes to the world of autism.

Photo: The Photo in this post was given for this purpose by a representative of the Autism Research Institute.

Dr. James Adams

Autism Light #64 is Dr. James Adams.

Dr. James B. Adams, Ph.D. is from Phoenix, Arizona. He has a long tenure of serving as a professor of chemistry at Arizona State University and he is currently a President's Professor and the Director of the Autism/Asperger's Research Program at Arizona State University, where he is responsible for ASU's cutting edge autism research. His research has focused on the biological causes of treatments of autism. He went in this direction after his daughter Kim was diagnosed with autism in 1994.

Nightline Presentation:  The following is a portion of a Nightline special on Dr. Adams' story.

Specific Research: 

I asked Dr. James Adams if there are three things that people who have a loved one with autism would find helpful related to his research.  He noted research has found that these three treatments are helpful to many children or adults with autism.

1. Vitamin/mineral supplements. Dr. James Adams indicated that he considers his most important research study to be the one called the "Nutritonal and metabolic status of children with autism vs. neurotypical children, and the association of autism severity."  This was published in 2011 and is critical to understanding the role that vitamins, minerals, and essential amino acids have in individuals with autism. The study found statistically significant nutritional deficiency in people with autism. It has important implications for the utilization of a dietary plan for treating people with autism.
2. DMSA therapy to remove toxic materials. In 2009 Dr. James Adams did a study related to the safety of oral DMSA therapy which is available online at this link. 
3. Seizure treatments. In 2011 Dr. James Adams completed a study on various traditional and non-traditional seizure treatments which is available online at this link. The research can help with selecting a treatment for seizures for people on the autism spectrum. 

Autism/Asperger's Research Program at ASU:  Dr. James Adams is the director of the Autism/Asperger's Research Program at Arizona State University.  The AARP at Arizona State University says their "focus is primarily on biomedical issues, including nutritional deficiencies, heavy metal toxicity, and bacterial/yeast overgrowth in the gut."

Autism Society of America: Since 2000, Dr. Adams has served as the President of the Autism Society of America's Greater Phoenix Chapter. In 2007, Dr. James Adams received the Evening of Champions Award from the national Autism Society of America. The award was given for research and service to autism.

Autism Research Institute: Dr. James Adams has been involved in the Autism Research Institute as a board member from 2007-2009.  He is also currently the co-chair of the Science Advisory Council of the Autism Research Institute. Dr. James Adams has presented science workshops at Autism Research Institute Conferences, including the one October 13-16, 2011 in LasVegas, Nevada.

Dr. James Adams is an Autism Light because his scientific research on the causes and treatments of autism is very helpful to the biomedical area of the autism community. For more information on Dr. James Adams view his full resume available at this link at the website for the Autism/Asperger's Research Program at Arizona State University.

Special thanks to Dr. James Adams for being dedicated to conducting priceless research on autism.  Your time and findings are providing the opportunities for new insights into treating autism.

Autism Light honors diverse heroes to the world of autism. 

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Photo: Photo in this post used with permission of Dr. James Adams.

This Autism Light post went into syndication at Autisable.

Dr. Stephen Edelson

Autism Light #52 is Dr. Stephen Edelson.

Stephen M. Edelson, Ph.D.

Dr. Stephen M. Edelson lives in San Diego, California and serves as the Director of the Autism Research Institute.  Dr. Stephen Edelson is an Autism Light because he has dedicated over 30 years of his life to autism research, and has a trademark for connecting the dots so the latest and cutting edge research results make a true difference for the lives of people with autism.

Work with Dr. Bernard Rimland:  Dr. Stephen Edelson partnered with the late Dr. Bernard Rimland for 20 years and succeeded him as the Executive Director of the Autism Research Institute in 2006. These two giants in the world of autism co-edited the book Recovering the Autistic Child. You may order this and other books through the Bookstore at the Autism Research Institute's Website. However, we have a special opportunity to all readers of this blog. Dr. Edelson is giving away a complimentary copy of this book on our blog. See the post at this link for all the details of this giveaway which starts today and goes for the next two weeks, leading up to the Autism Research Institute's Fall Conference.

Education: Dr. Stephen M. Edelson earned his Doctorate in Experimental Psychology at the University of Illinois at Champaign-Urbana and had Dr. Douglas Medin as a mentor. His research has focused on these four areas in particular.

• Biomedical
• Behavioral
• Sensory
• Cognition

Other Roles: Here are a few of Dr. Stephen Edelson's additional roles in service to autism.

• Serves on panel of professional advisers to the Autism Society of America
• Editor of the Autism Research Review International quarterly newsletter (Subscription Information)

Some Practical Conclusions:  I asked Dr. Steve Edelson to share a few practical things for the autims community that could make life better for those who have autism and those that love someone with autism. Here is a summary of that advice.

1. Environmental toxins and autism.  Research supports a direct correlation between environmental toxins and autism. Dr. Edelson recommends Stuart Freedenfeld's free video from the 2011 Conference in Atlanta, "The Role of Environmental Toxins in the ASD Epidemic".   
2. Absorption of food for those with autism. Problems in this area can cause people with autism to be prone to have gastrointestinal problems. Dr. Edelson writes, "There are many changes that might be made, such as eating organic foods, avoiding preservatives, food colorings and artificial flavorings, and trying restricted diets."  
3. Sleep problems for those with autism.  Dr. Edelson says, "There are several safe and natural remedies that might be effective in improving sleep, such as melatonin and 5-HTP, and there are behavioral techniques parents can employ.  Dr. Edelson recommends a free workshop addressing sleep at the upcoming ARI Conference in LasVegas on October 13.    
4. Training methods.  Dr. Edelson writes, "In many cases, the more stimulation provided to a person on the autism spectrum, especially when young, the better prognosis. This includes education, social skills training, occupational therapy including sensory integration, and more."
5. Behavior problems.  Dr. Edelson writes, "I am often asked for advice on treating severe behavior problems. Effective interventions include teaching better communication skills and engaging in vigorous exercise."

Global Autism Alliance:  Dr. Stephen Edelson continues to seek global partnerships in working with autism research. Here is a video of Dr. Edelson introducing the Global Autism Alliance.

Autism Research Institute (ARI): The following are some key facts that ARI provides about their organization.

• It is a non-profit 501(c)3 organization focused on conducting and sponsoring research aimed at improving the quality of life for today's generation of children and adults with autism spectrum disorders. 
• It is the oldest autism research organization in the world with a data bank of over 40,000 case histories from more than 60 countries.
• ARI promotes the understanding of autism via conferences and research, but does not endorse or reject specific treatments or professional services.

Autism Research Institute Conferences:  The Autism Research Institute holds semi-annual conferences (on a Spring/Fall schedule).  The next one will be held in LasVegas on October 13-16, 2011. Following that there is one in the New York and New Jersey area on April 26-29, 2012. An ARI Conference provides the invaluable opportunity for the diverse members of the international autism community to learn about the latest research and its practical application and implications from world renowned professionals in various areas of autism work.  The Fall, 2011 conference will include Lisa Ackerman, James B. Adams, Melissa Olive, Vicki Kobliner, and Kenneth Bock and many others.  Lisa Ackerman was the featured Autism Light in this blog for August 31, 2011.

The following is Dr. Stephen Edelson talking about a previous Autism Research Institute conference that was held in Atlanta, Georgia in the Spring of 2011.

Social Media/Twitter: The following are two ways to follow Dr. Edelson, Autism Research Institute, or the ARI Conference on Twitter.

• Twitter (@TreatingASD)
• Twitter (@ariConference)

Special thanks to Dr. Stephen Edelson for your tireless efforts to illuminate a brighter world of possibilities for those with autism.  

Autism Light honors diverse heroes to the world of autism.

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Photo: Photos in this post used with permission of Dr. Stephen Edelson.

Note: There is a Stephen B. Edelson, M.D., who practices in Atlanta, Georgia and also works with children with autism.  The two Stephen Edelson's are not related to one another. 

This Autism Light post went into syndication at Autisable. 

Dr. Daniel Openden

Autism Light #50 is Dr. Daniel Openden.

Dr. Daniel Openden

Dr. Daniel Openden is Vice President and Clinical Services Director for the Southwest Autism Research & Resource Center (SARRC) in Phoenix, Arizona.  Dr. Daniel Openden has received his Ph.D. in Special Education, Disability and Risk Studies from the University of California and was mentored by Drs. Robert and Lynn Koegel. Dr. Daniel Openden is an Autism Light because of his important role as a leading autism researcher and clinical services director who has focused on early intervention strategies and the role of parents in educating children with autism.

In addition to his work at SARRC, Dr. Daniel Openden has the following special roles in autism research.

• Science Advisory Board of TeachTown. 
• Associate Editor for the Journal of Positive Behavior Interventions.
• Adjunct faculty member of Arizona State University.

He is also a founding Board Member of the Council for Autism Services.

Awards: 

• In June, 2011, Dr. Daniel Openden received the Phoenix Business Journals Forty Under Forty Award.
• In 2004, Dr. Openden received the CalABA Julie Vargas Award for original  research with his study, "A Systematic Desensitization Paradigm to Treat Hypersensitivity to Auditory Stimuli in Children with Autism in Family Contexts."  

Speaker: Dr. Openden is also a frequent speaker at autism conferences and events.

• He spoke at the 2011 National Autism Conference and the program at the 2011 National Autism Conference listed his research interests as, "parent education, professional development, positive behavior supports, early intervention, inclusion, and dissemination of service delivery models for children with Autism Spectrum Disorders."  
• In 2010 Dr. Openden gave a presentation in South Carolina and SCNow.com wrote a news article on that speech.
• In 2009, he was the keynote at the OAR Conference.  

Research Area: The majority of Dr. Openden's work has focused on parent training.  He explained to me the importance of this strategic partnership with parent education in this way:

I think it is important to recognize that parents can be effectively trained to deliver high quality intervention (in my work, Pivotal Response Treatment [PRT]) and make a positive impact on their child's symptoms. Parents are often our most committed group of people, and when provided with good training in evidence-based interventions, likely increase the intensity of treatment and improve outcomes. (Daniel Openden)

Dr. Daniel Openden shared with me that in his opinion two particular professional studies by others have had the most impact on autism research.  These two are:

• Dr. O. Ivaar Lovaas' Study (1987) 
• Dr. Phillip Strain's Study on LEAP

Behavior Imaging Solutions: The following is the video of Dr. Openden explaining how they use Behavior Imaging Solutions at SAARC to help with early intervention strategies. Behavior Imaging Solutions is a system where parents upload video of children being taught to their Internet site and then trained therapists can access them and offer guidance on the intervention strategies being employed to improve specific behaviors with a specific child.

Social Media:  Follow Dr. Daniel Openden on the following social media.

• LinkedIn

Thanks to Dr. Daniel Openden for being an Autism Light. The research and work that he is doing to improve the lives of those with autism is making a difference in Arizona and beyond.  

Autism Light honors diverse heroes to the world of autism.

Photo: Photo in this post used with permission of Daniel Openden.

This post went into syndication on Autisable. 

Dr. David Amaral

Autism Light #33 is Dr. David Amaral.

Dr. David Amaral is a Distinguished Professor at the Department of Psychiatry and Behavioral Sciences at the University of California Davis. His full biography is available at the UC Davis website.  He is also the Director of Research at the UC Davis M.I.N.D. Institute.  Dr. Amaral provides a welcome to the work of the M.I.N.D. Institute at this link.


Below is a presentation of Dr. David Amaral discussing the M.I.N.D. Institute and the evolution of autism research.

One of Dr. David Amaral's research projects is called the Autism Phenome Project.  Dr. Amaral says, "The goal of this project is to identify subtypes of autism. Once we identify those, we believe that we can go after the cause for each one in a more productive fashion (Source)."   


This video is of Dr. David Amaral discussing Autism Research Trends at the 2011 IMFAR Conference sponsored by the International Society for Autism Research. 

Dr. David Amaral is also the editor (along with David Geschwind and Geraldine Dawson) of the book, Autism Spectrum Disorders, that was published in June, 2011.  Because 80 researchers are covered in the book, Amazon calls this book, "a virtual 'who's who' of autism research."  The following are some links on the Internet about his recent research work related to autism that has received the attention of the news media.

• US Researchers Identify Two Autism Strains in Major Breakthrough (Fox News)
• Research Offers Hope for Autism Blood Test (Fox News)
• UC Davis Frontiers Website
• An Expert Talks About Autism (New York Times) 
• A transcript of a PBS News Hour interview done in June, 2011 with Dr. David Amaral.
• David Amaral's Wikipedia Page.

Dr. David Amaral is an Autism Light because of his leadership in autism research. Special thanks to Dr. David Amaral for being an Autism Light.


Autism Light honors diverse heroes to the world of autism. 

Dan and Claire Marino

Autism Lights #32 are Dan and Claire Marino.

Dan and Claire Marino are from Miami, Florida and operate the Dan and Claire Marino Foundation for autism. They have a son Michael who has autism. Dan and Claire Marino are Autism Lights because of the difference they are making in the cause of autism through their foundation and by being relentless advocates.

Hall of Fame Quarterback: Dan Marino was the Quarterback #13 of the Miami Dolphins from 1983-1999. During his career Dan Marino broke numerous records referenced at the DanMarino.com website, many of which should stand for years. Dan Marino was inducted into the Pro Football Hall of Fame in 2005.  He is also the author of the book Dan Marino: My Life in Football.

Quote: Dan Marino said the following about autism:

We can change the lives of autistic children. We can make a difference. There are hundreds of families in Florida who can't afford the therapists.

Dan Marino Foundation: Dan and Claire Marino started the Dan Marino Foundation in 1992 to help provide autism services to children in South Florida.  Over the years the Dan Marino Foundation has evolved into funding a variety of services that are making a difference for autism everywhere, including treatments, research (through MARI), and Internet based education (childnett.tv) on autism.  The following YouTube video tells the story of the foundation.

2012 WalkAbout Autism: The Marino's have continued their highly successful fundraising efforts by raising funds for autism at special events. On January 28, 2012 they held their 2nd Annual Autism Awareness event called WalkAbout Autism. The event raised over $700,000 and over 17,000 people participated. A story of the event is at this link.

College Bound: In February, 2012 it was announced that Dan Marino and the Dan Marino Foundation plan to start a college for developmentally challenged adults in downtown Ft. Lauderdale, Florida. The school will focus on vocational trades and be geared like a two year college.  Read a news story on www.thephinsider.com about this exciting plan that Dan Marino has to continue to be a light for autism.

Awards: 

• Dan Marino received the "Point of Light" Award in 2010 from Florida's then Governor Crist.
• Dan and Claire Marino won the Children of the World Advocate Award in 2010.  The video below was the presentation video for them when they received that award.

Social Media:  You can follow Dan Marino and his foundation at the following social media.

• Facebook
• Twitter (Verified Account of Dan Marino)
• Twitter (Dan Marino Foundation)

For more information on the Dan Marino Foundation visit their website or the ChildNettTV website.  Special thanks to Dan and Claire Marino for being Autism Lights.

Autism Light honors diverse heroes to the world of autism.