Replay: Autism Safety and Crisis Prevention Conference (free and online)

February 28, 2012

For those that missed the Autism Safety and Crisis Prevention interactive conference on AutismCollege.com, it is being replayed for free on Saturday, March 10th, from 8:00am to 5:00pm PST (11:00am to 8:00pm EST).

AutismCollege.com in partnership with the National Autism Association (NAA)  presented a series of free webinars on Autism Safety and Crisis Prevention. This online conference was sponsored in part by The Social Express. Due to requests from people who could not attend, it is being replayed. (Note that listeners will not be able to send in questions to be replied as for the live event).

Topics and presenters on Saturday March 10th, are as follows:

  •  8:00am – 9:30am PST, Dr. Nora Baladerian, Ph.D. – “How Can Parents Reduce the Risk of Sexual Abuse of Their Child or Young Adult?”
  • 9:45am – 11:15am PST, Dr. Lori Ernsperger – “The 3 R’s to Bullying Prevention for Students with Autism Spectrum Disorders: Recognize, Respond, and Report”
  • 11:45am – 1:15pm PST, Dr. Joshua Feder – “The Problem of Depression and Suicidal Ideation in Autism and Related Disorders”
  • 1:30pm -3:00pm PST,  Wendy Fournier, NAA – “The Scope of Wandering, Prevention Strategies, and Resources”
  • 3:15pm to 5:00pm PST, Pat Amos, M.A. – “Preventing and Eliminating the Use of Restraints and Seclusion”
To register for free, go here. For a complete  description of the presentations, and bios of the presenters, go here.
Transcripts of the conference may be pre-ordered here.  A portion of the profits will be donated to the National Autism Association for their Safety Programs. Delivery may take up to three weeks. Thanks for your patience.

Bibliography for ‘Shouldn’t School Be Safe?’ a TASH webinar

February 17, 2012

This bibliography is a companion piece to the presentation ‘Shouldn’t School Be Safe?’ a TASH webinar shared by  by Pat Amos during the Autism Safety and Crisis Prevention webinar. The presentation contains a link to the TASH publication of the same name, which is available for free download on the TASH website. This link will take you to the section of the TASH website where we have archived free resources on preventing restraint and seclusion:

This bibliography also contains basic research and information that will allow parents to become familiar with the evidence base surrounding the dangers and the inappropriateness of using restraint, seclusion, and other aversive interventions as part of a child’s education or behavior support plan.  Since federal education law requires schools to implement evidence-based practices, parents may wish to use this information in developing their child’s IEP.

 BIBLIOGRAPHY for : Shouldn’t School Be Safe? What every parent and advocate should know NOW  (compiled by Pat Amos);

  • Alliance to Prevent Restraint, Aversive Interventions, and Seclusion (APRAIS) (2005).  In the Name of Treatment.  Available online.
  • Alliance to Prevent Restraint, Aversive Interventions, and Seclusion (APRAIS) (2011). Use of Restraint, Seclusion, and Aversive Procedures with Students with Disabilities .
  • Bogdan, R., and Taylor, S.J. (1989). “Relationships with Severely Disabled People: The Social Construction of Humanness,” in Social Problems 36,2:135-148.
  • Council of Parent Attorneys and Advocates (COPAA) (2009).  Unsafe in the Schoolhouse.  Available online.
  • Hardenstine, B. (2001).  Leading the Way Toward a Seclusion and Restraint-Free Environment.  Commonwealth of Pennsylvania: Department of Public Welfare.
  • Harris, S. L., Handleman, J.S., Gill, M. J. & Fong, P. L. (1991). Does Punishment Hurt?  The Impact of Aversives on the Clinician.  Research in Developmental Disabilities, 12, 17-24.
  • Helmstetter, E., Peck, C. A., & Giangreco, M. F. (1994). “Outcomes of interactions with peers with moderate or severe disabilities: A statewide survey of high school students,” in JASH, Vol. 19, 263-276.
  • Herman, J .L. (1992). Trauma and Recovery.  NY: Basic Books.
  • Huckshorn, K. A.(2007).  Six Core Strategies for Reducing Seclusion and Restraint Use.  Available online.
  • Hunt, P., Staub, D., Alwell, M., & Goetz, L. (1994). “Achievement by all students within the context of cooperative learning groups,” in JASH, Vol. 19, pp. 290-301.
  • Hyman, I. A. (1995). Corporal punishment, psychological maltreatment, violence, and punitiveness in America. Research, advocacy, and public policy. Applied & Preventive Psychology, 4, 113-130.
  • Hyman, I. A. (1996). Corporal punishment. In T. Fagan, & P. Wardon (Eds.), Historical Encyclopedia of School Psychology (pp. 92-93). Westport, CT: Greenwood
  • Kennedy, S. S. (2005). Using Restraint: The Legal Context of High Risk Interventions.  Presentation at “Examining the Safety of High-Risk Interventions,” Cornell University, June 1-4.
  • Kennedy, S. S. and Mohr, W. K. (2001).  A Prolegomena on Restraint of Children: Implicating constitutional rights.  American Journal of Orthopsychiatry, 71(1), 26-37.
  • Kipnis, D. (1987).  Psychology and Behavioral Technology. American Psychologist, 42(1), 30-36.
  • Kishi, G. S., & Meyer, L. H. (1994). “What children report and remember: A six-year follow-up of the effects of social contact between peers with and without severe disabilities, “ in JASH, Vol. 19, pp. 277-289
  • LeBel, J., and Goldstein, R. (2005). The Economic Cost of Using Restraint and the Value Added by Restraint Reduction or Elimination,” by Psychiatric Services, 56:1109-1114.  Available online.
  • Marquis, J., Horner, R., et al. (2000).  A Meta-Analysis of Positive Behavior Support. In Contemporary Special Education Research: Syntheses of the Knowledge Base on Critical Instructional Issues ed. Russell Gersten, Ellen P. Schiller, and Sharon Vaughn Mahwah, New Jersey and London: Lawrence Erlbaum Associates.
  • Miller, D. C., George, M. and Fogt, J.B. (2005). “Establishing and Sustaining Research-Based Practices at Centennial School:  A descriptive case study of systemic change,” Psychology in the Schools, Vol. 42(5).  Available online.
  • Miller, D. E. (1986). The management of misbehavior by seclusion. Residential Treatment for Children and Youth, 4, 63-73.
  • Mohr W. K., and Anderson, J. A. (2001). Faulty assumptions associated with the use of restraints with children. Journal of Child and Adolescent Psychiatric Nursing, 14, 141- 151.
  • Mohr, W. K., Petti, T. A., Mohr, B. D. (2003). Adverse Effects Associated with Physical Restraint.  The Canadian Journal of Psychiatry, 48, 330-337.
  • National Association of State Mental Health Program Directors. (1999). Reducing the Use of Seclusion and Restraint: Findings, strategies and recommendations. Alexandria, VA. Available online.
  • National Disability Rights Network (NDRN) (2009). School is not supposed to hurt.  Available online.
  • National Disability Rights Network (NDRN) (2010). School is not supposed to hurt: update on progress in 2009 to prevent and reduce restraint and seclusion in schools .  Available online.
  • National Technical Assistance Center for State Mental Health Planning (2002).  Eliminating the Use of Seclusion and Restraint: Special Edition of NTAC Networks.  Alexandria, VA.  Available online.
  • Perry, B.D. (1997). Incubated in Terror: Neurodevelopmental factors in the “cycle of violence.” In J. Osofsky (Ed.),  Children in a Violent Society, 124-149. New York: Guilford Press.
  • Perry, B. D., Pollard, R. A., Blakley, T. L., Baker, W. L., and Vigilante, D. (1995). Childhood Trauma, the Neurobiology of Adaptation and Use-dependent Development of the Brain: How states become traits.  Infant Mental Health Journal, 16, 271-289.
  • Pflueger, W. (2002).  “Consumer View: Restraint is Not Therapeutic.”  In Violence and Coercion in Mental Health Settings: Eliminating the Use of Seclusion and Restraint,” a Special Edition of NTAC Networks, Summer-Fall.  Alexandria, VA:  National Technical Assistance Center for State Mental Health Planning.  Available online.
  • Scotti, Joseph, Evans, Ian, Meyer, Luanna, and Walker, Pamela (1991). A Meta-Analysis of Intervention Research with Problem Behavior: Treatment Validity and Standards of Practice. American Journal on Mental Retardation, Vol. 96, No. 3, pp. 233-256.
  • Steel, E. (1999). Seclusion and Restraint Practice Standards: A Review and Analysis.  National Mental Health Association Technical Assistance Center (NTAC). Available online.
  • Stefan, S. (2006).  Lessons from the Successful Reduction and Elimination of Restraint and Seclusion in Psychiatric Settings.  Presented at TASH Annual Conference 11/8/06, Baltimore, MD.
  • TASH (2011).  Shouldn’t School Be Safe?   Available online: http://tash.org/wp-content/uploads/2011/05/TASH_Shouldnt-School-Be-Safe1.pdf
  • TASH (2011). The Cost of Waiting: Use of restraints, seclusion, and aversive procedures with students with disabilities.  Available online.
  • Turnbull, H. R., Wilcox, B. L., Stowe, M., Raper, C., Hedges, L. P. (2000).  Public Policy Foundations for Positive Behavioral Interventions, Strategies, and Supports.  Journal of Positive Behavioral Interventions, 2 (4).
  • Turnbull, H. R., Wilcox, B. L., Turnbull, A. P., Sailor, W., Wickham, D. (2001).  The IDEA, Positive Behavioral Supports, and School Safety.  Journal of Law and Education, 30(3).
  • U.S. General Accounting Office (GAO) (1999).  Improper Restraint or Seclusion Use Places People At Risk. (GAO publication HEH-99-176).  Washington, D.C.: USGAO.  Available online.
  • U.S. General Accounting Office (GAO) (2007). Residential Treatment Programs: Concerns Regarding Abuse and Death in Certain Programs for Troubled Youth.  (GAO-08-146T). Washington, D.C.: USGAO.  Available online.
  • United States Government Accountability Office (GAO) (2008). Residential Programs: Selected Cases of Death, Abuse, and Deceptive Marketing, GAO-08-713T Washington, D.C.: USGAO.  Available online.
  • United States Government Accountability Office (GAO) (2009).  Seclusions and Restraints:  Selected Cases of Deaths and Abuse at Public and Private Schools and Treatment Centers. (GAO-09-719T). Washington, D.C.: USGAO.  Available online.
  • Witte, L. (2008). “Reducing the use of seclusion and restraint: A Michigan provider reduced its use of seclusion and restraint by 93% in one year on its child and adolescent unit,” Behavioral Healthcare, April 2008.  Available online.

Wandering and Autism: Prevention Strategies and Resources

February 16, 2012

Wandering is a real risk when it comes to children on the autism spectrum.  Sadly,  half of families with elopers report they had never received advice or guidance about elopement from a professional (IAN Research Report: Elopement and Wandering, 2011).

Autism College, in partnership with the National Autism Association, wants to help change that statistic. On Saturday February 18, we are offering a webinar on The Scope of Wandering, Prevention Strategies, and Resources as part of our free  online Autism Safety and Crisis Prevention conference, sponsored in part by The Social Express. It’s your opportunity to get  strategies you can use to decrease your worries.  The webinar will take place on  Saturday, February 18, 8:15 am – 9:45 am PST (11:15 am -12:45 pm EST). The webinar will be interactive.

Register here for the conference, and you will receive information on how to attend this webinar.

How much of a problem is wandering for children with autism? A few statistics:

  • In 2009, 2010, and 2011, accidental drowning accounted for 91% total U.S. deaths reported in children with an ASD ages 14 and younger subsequent to wandering/elopement. (SOURCE: National Autism Association, Lethal Outcomes in ASD Wandering, 2012)
  • More than one third of ASD children who wander/elope are never or rarely able to communicate their name, address, or phone number (IAN Research Report: Elopement and Wandering, 2011)
  • Two in three parents of elopers reported their missing children had a “close call” with a traffic injury (IAN Research Report: Elopement and Wandering, 2011)
  • Children with ASD are eight times more likely to elope between the ages of 7 and 10 than their typically-developing siblings (IAN Research Report: Elopement and Wandering, 2011)

Description of Presentation Topic: The Scope of Wandering, Prevention Strategies, and Resources

Incidents of missing children and wandering-related deaths are being reported in the news with frightening frequency. In the last three years, more than 20 individuals with autism have lost their lives due to wandering. Preliminary data in the first IRB-approved study on autism-related wandering shows that half of children with autism have successfully wandered from adult supervision. Families cite wandering as the most stressful behavior they face. Drowning associated with autism elopement is a leading cause of death among children and adults on the autism spectrum. This presentation will discuss the scope of this issue, prevention strategies and provide resources for caregivers to keep their loved ones safe.

Presenter: Wendy Fournier is a founding board member and President of the National Autism Association.  The organization has been instrumental in bringing federal attention to the issue of autism-related wandering.  In 2010, Wendy and NAA Executive Director Lori McIlwain were invited to present on the wandering/elopement issue before the Interagency Autism Coordinating Committee at NIH, where they outlined the need for data collection, medical diagnostic coding, and federal health agency involvement. As a result, the committee has since implemented several of NAA’s recommendations. In addition to bringing awareness to the issue, NAA has developed extensive resources for the community including the AWAARE collaboration website and the Big Red Safety Box program.

Register here for the conference.

What Can We Do About Depression and Suicidal Ideation in Youths With Autism?

February 12, 2012

Depression and suicide ideation are are on the list of things we wish we did not have to know more about, but as parents and educators, it is an area that we need to be more informed about – knowledge is empowering!

Autism College in partnership with the National Autism Association (NAA) is presenting a series of free on-line conference webinars on Autism Safety and Crisis Prevention,  sponsored in part by The Social Express.

On Wednesday, February 15, 6:00pm to 7:30pm PST (9:00pm to 10:30pm EST) Dr. Joshua Feder will be addressing this topic. To register for free, go here.

Here is some information as to what this webinar will cover:

Presentation Topic: The Problem of Depression and Suicidal Ideation in Autism and Related Disorders

  • How often do we think it occurs?
  • How serious is it?
  • How do we distinguish serious symptoms from everyday frustration?
  • What are the risk factors? Are they similar to the general population, e.g. depression, loss, and substance use?
  • What should we look for?  Learning to read the cues.
  • When should we be very worried? Does the driven quality of those with ASDs make people more at-risk?
  • What can we do: in everyday life to help prevent depression; when people are sad;
  • How can we use the mental health system?  Are therapies or medications effective? Are there other ways to address depression in ASD?

Dr. Joshua Feder is the Director of the Department of Research in the Graduate School of the Interdisciplinary Council on Developmental and Learning Disorders, and a voluntary assistant professor at UCSD School of Medicine.  Dr. Feder specializes in neurobehavioral medicine and application of DIR/Floortime with families and in schools.  He co-chairs the DIR/Floortime Coalition of California, and co-chairs the South Counties Autism Regional Taskforce (SCART) of the California Senate Select Committee on Autism & Related Disorders. Dr. Feder helped write the American Academy of Child and Adolescent Psychiatry (AACAP) Practice Parameter for Assessment and Treatment of Autism and Related Disorders. He reviews grants for the Organization for Autism Research (OAR) and the National Foundation for Autism Research (NFAR), is a primary clinical investigator for National Institutes of Mental Health (NIMH) and privately funded research in pharmacogenetics with the Child and Adolescent Psychiatric Trials Network (CAPTN).  Dr. Feder serves as medical director for SymPlay developing interactive technology and distance learning systems to support relationship based interventions.  He is involved in advocacy for family choice in evidence-based practice, and he is a frequent commentator and speaker for ValeriesList and for Autism College. Dr. Feder has a full time child and family psychiatric practice in Solana Beach, California.

Register here for the conference.

How can parents reduce the risk of sexual abuse of their children (as adults or children) with autism?

February 7, 2012

“I have suffered real abuse. Really if it were not for my mom and my therapist pleading for me, I would have retreated into my world. When the bad thing  happened I wanted to  die. Greatly  my mom and therapist  found  a way to help  me grow  from this  experience. I learned  that  there  were really bad people that could do things  to your  body,  but I learned that  you don’t have to let them into your soul.”  – a young man with autism.

Although data on abuse of adults with disabilities is scarce, research on children with disabilities finds that they become victims of abuse at 3.4 times the rate of children who do not have disabilities (Sullivan,T. and Knutson, D., 2001).  While many agree that abuse occurs more, those who specialize in the field of abuse & disability believe that for both children and adults, increased victimization is more likely 10 times the rate than for those without disabilities.

Dr. Nora BaladerianAccording to Nora Baladerian, Ph.D., a licensed psychologist practicing both clinical and forensic psychology, children with disabilities have many of the same needs as any other child, for education, family, safety, recreation, among many others.  Most parents of children with disabilities receive information and guidance on these aspects of life, but nearly none on the problems of child abuse, sexual assault, molestation, or other types of maltreatment that they may experience.  Knowledge is power, and when parents and other family members are aware that their child (or adult family member) who has a significant disability is more likely to be targeted for abuse than other children, they are more likely to implement the risk reduction strategies available to them.

This is one of the reasons Autism College has partnered with the National Autism Association to put on a free online conference, Autism Safety and Crisis Prevention. This series of  webinars is sponsored in part by The Social Express.  Dr. Nora Baladerian will present on: How can parents reduce the risk of sexual abuse of their children (as adults or children)?,  on Saturday, February 11, 8:15am PST – 9:45am PST (11:15am EST – 12:45pm EST)

The webinar will be interactive. There will be an opportunity for those signed up to send in questions ahead of time or while listening to the program. Chantal Sicile-Kira will moderate the Q & A.  To register for free, go here. For more information about the other webinars included in this conference, go here. Instructions will be sent to those signed up. (For those who wish to purchase transcripts, they will be made available after the conference.)

Dr. Baladerian’s presentation  How can parents reduce the risk of sexual abuse of their children (as adults or children)? will focus on the basics all parents should know about sexual abuse among individuals on the Autism Spectrum. Topics to be included include:

  • You know your child. How can you prepare your child for this particular danger?
  • How can you prepare yourself to be not only their educator, but to be a part of an overall strategy to reduce the risk of becoming a victim?
  • This presentation will discuss the basics of being a knowledgeable parent in the area of sexual abuse, including knowing the signs of possible abuse, designing a plan, and developing a protocol to use for all new persons who you will approve or hire to work with your family.

Nora Baladerian, Ph.D., is a licensed psychologist in Los Angeles, California, practicing both clinical and forensic psychology . Since 1971, long before the crime victimization field as a whole focused attention on the needs of persons with disabilities, she has specialized in working with individuals with developmental disabilities. With an expertise in serving crime victims with disabilities and people charged with victimless sex crimes, she has successfully rallied victim/witness organization leaders, crime victims rights advocates, social service professionals, forensic psychologists, law enforcement, attorneys, members of the judiciary, and others to take up the cause of ensuring that the needs of society’s most vulnerable are not overlooked or otherwise forgotten. In 1986, as a proactive way both to bring together the growing number of those dedicated to this work and promoting greater cross-disciplinary dialog, she began convening national conferences on abuse of individuals with disabilities, hosting the 19th in 2005 with The Arc of Riverside County, and the First Online Professional Conference of its kind that same year. In 2008, the Attorney General of the United States presented her with the National Crime Victims Service Award in recognition of her pioneering efforts on behalf of persons with disabilities and in advancement of the mission of the Office for Victims of Crime of the U.S. Department of Justice.

Many thanks to our sponsor, The Social Express,

The Social ExpressSocial Learning Made Easy

What can you do about your ASD child and Bullying? Sexual Abuse? Suicide Ideation? Wandering? Restraints & Seclusion?

January 22, 2012

As parents and educators of children and teens on the spectrum we have real worries in regards to the safety of our loved ones and students. Here is your opportunity to get some facts and strategies to decrease your worries.

Autism College in partnership with the National Autism Association (NAA) is presenting a series of free on-line conference webinars on Autism Safety and Crisis Prevention.  Topics to be addressed are sexual abuse risk reduction, bullying prevention, suicide risk, wandering, and preventing the use of restraints and seclusion. Don’t miss the opportunity to learn how to help support  the emotional and physical health and safety of your loved one affected by autism.

This series of interactive webinars  to be held in February will include presentations by  experts in the field of autism.  For those unable to attend all the webinars, there will be audio files and transcripts available for purchase after the conference. Register here for the conference.

Topics, presenters and schedule  as follows:

 Moderator: Chantal Sicile-Kira, author and founder of AutismCollege.com. The webinars will be interactive.  Attendees will have the opportunity to type in questions pertaining to the topic before and during each webinar. Chantal will introduce each presenter and moderate the Q&A opportunity at the end of each presentation.

 

Presentation Topic: How can parents reduce the risk of sexual abuse of their children (as adults or children)?

Saturday, February 11, 8:15 PST – 9:45 am PST

This presentation will focus on the basics all parents should know about sexual abuse among individuals on the Autism Spectrum. You know your child. How can you prepare your child for this particular danger? How can you prepare yourself to be not only their educator, but to be a part of an overall strategy to reduce the risk of becoming a victim? This presentation will discuss the basics of being a knowledgeable parent in the area of sexual abuse, including knowing the signs of possible abuse, designing a plan, and developing a protocol to use for all new persons who you will approve or hire to work with your family.

Presenter: Nora Baladerian, Ph.D., is a licensed psychologist in Los Angeles, California, practicing both clinical and forensic psychology . Since 1971, long before the crime victimization field as a whole focused attention on the needs of persons with disabilities, she has specialized in working with individuals with developmental disabilities. With an expertise in serving crime victims with disabilities and people charged with victimless sex crimes, she has successfully rallied victim/witness organization leaders, crime victims rights advocates, social service professionals, forensic psychologists, law enforcement, attorneys, members of the judiciary, and others to take up the cause of ensuring that the needs of society’s most vulnerable are not overlooked or otherwise forgotten. In 1986, as a proactive way both to bring together the growing number of those dedicated to this work and promoting greater cross-disciplinary dialog, she began convening national conferences on abuse of individuals with disabilities, hosting the 19th in 2005 with The Arc of Riverside County, and the First Online Professional Conference of its kind that same year. In 2008, the Attorney General of the United States presented her with the National Crime Victims Service Award in recognition of her pioneering efforts on behalf of persons with disabilities and in advancement of the mission of the Office for Victims of Crime of the U.S. Department of Justice.

Presentation Topic: The 3 R’s To Bullying Prevention for Students with Autism Spectrum Disorders: Recognize, Respond, and Report

Saturday, February 11, 10:00 – 11:30am PST

Bullying in the United States was once a silent epidemic which was endured by millions of children on a daily basis. The attitude “kids will be kids” was just part of normal childhood development. Today, bullying in schools is being recognized as a national problem for all students including children with autism spectrum disorders (ASD). A report from the Massachusetts Advocates for Children (Ability Path, 2011) found that nearly 88% of individuals with ASD are bullied in school. Dr. Ernsperger will provide research and specific strategies in order for parents and professionals to create a safe educational environment and follow the legal requirements set out by the federal government on bullying prevention for students with disabilities.

Learning Objectives:

  • Recognize the statistics of bullying
  • Recognize the warning signs of victims and stereotypes of bullies
  • Respond to the victims of bullies
  • Respond to bullies effectively
  • Teach anti-bullying social skills
  • Report bullying incidence in school settings

Presenter: Dr. Lori Ernsperger is from Henderson, NV where she is the owner of Autism and Behavioral Consulting. Dr. Lori received her doctorate in Special Education from Indiana University. She has over 25 years of experience working in the public schools as a classroom teacher, administrator, and behavioral consultant. She is also an adjunct professor at St. Petersburg College in Florida. Dr. Ernsperger currently provides staff development and conference workshops to school district personnel and parents.

Her workshops cover the following topics: Managing Problem Behaviors, Implementing Effective Instructional Methods, Designing Appropriate and Functional Data Collection Methods for the Classroom, Practical Strategies for Working with Individuals with Asperger Syndrome, and How to Get Your Kids to Eat. Dr. Ernsperger is the author of: Keys to Success for Teaching Students with Autism and Just Take a Bite: Easy Effective Answers to Food Aversions and Eating Challenges and Girls Under the Umbrella of Autism Spectrum Disorders.

 Presentation Topic: The Problem of Depression and Suicidal Ideation in Autism and Related Disorders

Wednesday, February 15,  6:00-7:30  pm PST

  • How often do we think it occurs?
  • How serious is it?
  • How do we distinguish serious symptoms from everyday frustration?
  • What are the risk factors? Are they similar to the general population, e.g. depression, loss, and substance use?
  • What should we look for?  Learning to read the cues.
  • When should we be very worried? Does the driven quality of those with ASDs make people more at-risk?
  • What can we do: in everyday life to help prevent depression; when people are sad;
  • How can we use the mental health system?  Are therapies or medications effective? Are there other ways to address depression in ASD?

Presenter: Dr. Joshua Feder is the Director of the Department of Research in the Graduate School of the Interdisciplinary Council on Developmental and Learning Disorders, and a voluntary assistant professor at UCSD School of Medicine.  Dr. Feder specializes in neurobehavioral medicine and application of DIR/Floortime with families and in schools.  He co-chairs the DIR/Floortime Coalition of California, and co-chairs the South Counties Autism Regional Taskforce (SCART) of the California Senate Select Committee on Autism & Related Disorders. Dr. Feder helped write the American Academy of Child and Adolescent Psychiatry (AACAP) Practice Parameter for Assessment and Treatment of Autism and Related Disorders. He reviews grants for the Organization for Autism Research (OAR) and the National Foundation for Autism Research (NFAR), is a primary clinical investigator for National Institutes of Mental Health (NIMH) and privately funded research in pharmacogenetics with the Child and Adolescent Psychiatric Trials Network (CAPTN).  Dr. Feder serves as medical director for SymPlay developing interactive technology and distance learning systems to support relationship based interventions.  He is involved in advocacy for family choice in evidence-based practice, and he is a frequent commentator and speaker for ValeriesList and for Autism College. Dr. Feder has a full time child and family psychiatric practice in Solana Beach, California.

Presentation Topic:  The Scope of Wandering, Prevention Strategies, and Resources

Saturday, February 18, 8:15 – 9:45 am PST

Incidents of missing children and wandering-related deaths are being reported in the news with frightening frequency. In the last three years, more than 20 individuals with autism have lost their lives due to wandering.  Preliminary data in the first IRB-approved study on autism-related wandering shows that half of children with autism have successfully wandered from adult supervision.  Families cite wandering as the most stressful behavior they face.  Drowning associated with autism elopement is a leading cause of death among children and adults on the autism spectrum. This presentation will discuss the scope of this issue, prevention strategies and provide resources for caregivers to keep their loved ones safe.

Presenter: Wendy Fournier is a founding board member and President of the National Autism Association.  The organization has been instrumental in bringing federal attention to the issue of autism-related wandering.  In 2010, Wendy and NAA Executive Director Lori McIlwain were invited to present on the wandering/elopement issue before the Interagency Autism Coordinating Committee at NIH, where they outlined the need for data collection, medical diagnostic coding, and federal health agency involvement. As a result, the committee has since implemented several of NAA’s recommendations. In addition to bringing awareness to the issue, NAA has developed extensive resources for the community including the AWAARE collaboration website and the Big Red Safety Box program.

Presentation Topic:  Preventing and Eliminating the Use of Restraint and Seclusion

Saturday, February 18, 10:00 – 11:30 am PST

The rising tide of Positive Behavior Supports has not lifted all boats, and many students with autism and related disabilities continue to be subjected to the use of restraint, seclusion, and other aversives as part of their education and behavior intervention plans. Successful reforms have taken place in health care settings, in nursing homes, and in programs treating mental illness, but many of our schools have not yet “gotten the word” that these techniques are inherently unsafe and can result in serious injury, psychological trauma, and even death. Evidence clearly shows that restraint and seclusion are not education; they are the failure of education. This webinar will help parents, advocates, and teachers understand how to work together to eliminate these highly dangerous and counterproductive techniques.

Presenter: Pat Amos, M.A., has been an advocate for people with disabilities and their families for over 25 years. She is a founder of Autism Support and Advocacy in Pennsylvania and the Family Alliance to Stop Abuse and Neglect, past president of the Greater Philadelphia Autism Society, a founder and past president of the Autism National Committee, has served as a member of Pennsylvania’s Developmental Disabilities Council, and is a Board member of international TASH.  She currently works as an Inclusion Specialist with the Youth Advocate Program’s Autism Institute.   Her involvement in the movement to prevent restraint and seclusion is longstanding, and she has worked with the national Alliance for the Prevention of Restraint, Aversive Interventions, and Seclusion (APRAIS) since participating in its founding in 2004.

Register here for the conference.

Free -on-line Conference on Autism Safety and Crisis Prevention

January 14, 2012

[Updated! Registration is now live]

Autism College in partnership  with the National Autism Association (NAA) is presenting a free on-line conference on Autism Safety and Crisis Prevention.  Topics to be addressed are sexual abuse risk reduction, bullying prevention, suicide risk, wandering, and preventing the use of restraints and seclusion.

The on-line conference Autism Safety and Crisis Prevention  to be held in February,  will include presentations by  experts in the field of autism and  safety issues, and broaches sensitive topics with real life strategies.  There will be a question and answer session moderated by Chantal Sicile-Kira following each presentation.  Don’t miss the opportunity to learn how to help support  the emotional and physical health and safety of your loved one affected by autism. Schedule is as follows:

Saturday, February 11, 8:15am- 9:45am PST,  Dr. Nora Baladerian, Ph.D. will present “How  Can Parents Reduce the Risk of Sexual Abuse of Their Child or Young Adult?”.

Saturday, February 11, 10:00am-11:30am PST, Dr. Lori Ernsperger will discuss “The 3 R’s to Bullying Prevention for Students with Autism Spectrum Disorders: Recognize, Respond, and Report”.

Wednesday, February 15, 6:00pm-7:30pm PST, Dr. Joshua Feder will discuss “The Problem of Depression and Suicidal Ideation in Autism and Related Disorders”.

Saturday, February 18, 8:15am-9:45am PST,  Wendy Fournier of the NAA will  discuss Wandering .

Saturday, February 18, 10:00am- 11:30,am PST, Pat Amos, M.A. will discuss Preventing and Eliminating the Use of Restraints and Seclusion.

For those unable to attend live, there will be transcripts available for purchase. Register here.

Following Ezra: Lessons on Raising a Child with Autism

November 1, 2011

This post was originally published on my  Huffington Post blog.

Recently one of my publishers sent me a book, Following Ezra: What One Father Learned About Gumby, Otters, Autism, and Love from His Extraordinary Son. Having just emerged from many months of researching and writing book number five on autism, I was not predisposed to read anything associated with the A-word. However, being partial to interesting book covers, I couldn’t resist the urge to peruse this memoir. Once I opened it, I couldn’t put it down. Following Ezra by author Tom Fields-Meyer, is not just a book about raising a child with autism; it’s a very well-written book about the trials and tribulations of being a parent, period.

One reason this book is such a good read is that covering human interest stories is what Fields-Meyer does for a living. He is a former senior writer for People and has written for  the New York Times and the Wall Street Journal. He is a master storyteller, and this time he recounts his own personal story and that of his son, Ezra, from age 3, when he was diagnosed, to his bar mitzvah at age 13.

Another reason is the approach that Fields-Meyer decided to take in raising his son with autism, who didn’t like to play with children when he was little, obsessively lined up plastic dinosaurs, and avoided eye-contact. In the prologue of Following Ezra, Fields-Meyer describes his quest of searching for the right doctors, diets, medicines and therapies. But what he discovers is that he has been focusing on the wrong thing: “It wasn’t about finding the right expert for my child; it was about learning to be the right parent,” he writes.

For Fields-Meyer, learning to be the right parent meant developing a relationship with his son by following Ezra’s lead to learn more about his interests, motivations and way of thinking. Fields-Meyer discovers that Ezra has an incredible memory and an enthusiasm for life, and he decides to focus on these qualities to help him learn and grow. Ezra loves animals and going to the zoo; he loves Disney movies. At some point Ezra becomes obsessed with the calendar and celebrates important dates, such as the first time he set eyes on a Cardigan Welsh corgi, or the first of the month, by waking up at dawn and running around the house yelling “It’s the first day of May!” Fields-Meyer decides to celebrate with him. (On another note, having a child with a great memory for dates is certainly an added plus when you are writing a memoir.)

There is a scene in the book that helps explain Field-Meyer’s approach to parenting. Before Ezra was officially diagnosed, his parents took him to weekly visits to see a therapist, who tried to help Ezra by drawing him out. One day, when his wife tearfully expressed the frustrations of trying to play with him and just the situation in general, the therapist told them, “You have to allow yourself to grieve for the child he didn’t turn out to be.”

As Fields-Meyer explains, many parents in this situation are in mourning for the child they expected and hoped to have, and they have to go through a mourning process so that they can move on, as the therapist rightly pointed out. Only, he didn’t feel that way, because he hadn’t had any expectations about the child he was hoping to have. Over the years he’d seen acquaintances who wanted their children to go into the family business or become lawyers, or who didn’t want them to be gay. These parents were disappointed in their children when they didn’t turn out the way they expected. Fields-Meyer never wanted to be that kind of parent.

Most parents of children with regressive-type autism (children who developed normally and then lost the skills they had gained) would understandably have a different outlook. In those cases, parents mourn for the child they did have, the child that was interacting with them, that they saw change before their eyes. That’s a different situation. I have met many parents of children like mine, who showed signs of having significant developmental challenges from early on, and many of them mourn the child they wish they’d had, while accepting the child they do have. Personally, I relate to the author’s point of view. Raising Jeremy, who still requires 24/7 care at age 22, is exhausting and not without struggle. But whenever I read the news of the day, I am grateful that my son will never be maimed in war, become a serial killer or turn out to be a stockbroker on Wall Street who bilks trusting clients out of millions of dollars.

It’s clear that it is not always easy for Ezra to be Ezra, or for Fields-Meyer to be the parent of Ezra, and Fields-Meyer does not gloss over the challenges and weariness. He may not mourn for the child he did not get, but he certainly does not consider having Ezra as being a special blessing or a miracle. Parents will recognize the painful situations that many of us share: the haircuts where Ezra feels so tortured he grabs the scissors and throws them at the hairdresser; the times that Ezra runs out of the house clad only in his underwear; or clothes shopping expedition when Ezra licks his image in the mirror and then puts the shirt on — backwards.

Raising a child who has obsessive thoughts and who verbalizes them constantly can be truly exhausting. Fields-Meyer describes how, a few weeks before Ezra’s bar mitzvah, he helped Ezra put aside his obsessive thoughts about the Complete Star Wars Encyclopedia and gift cards he hopes to receive. Fields-Meyer takes him for a walk and listens to Ezra explain the mental jam he is in. Fields-Meyer instructs him to take all his thoughts about the coveted presents, put them all in a black lump in his head, pull the black lump out of his head through his ear, and leave the lump under a tree. He instructs him that if he has more obsessive thoughts before the bar mitzvah, he should send them there. This seems to work.

There are humorous yet embarrassing situations in this book that parents will relate to, such as the time Ezra asked the obese neighbor how he got so fat, or the day Fields-Meyer learned that Ezra could read. When Fields-Meyer asked why he set off the fire alarm, Ezra replied, “It said ‘pull down.'”

In a blog post on Fields-Meyer’s website, he describes a family custom that explains his attitude toward raising Ezra:

We have a custom in our family. When somebody breaks a glass, we celebrate. As soon as you hear the shards shattering on the kitchen floor, the rule is that you say: “I hated that glass! Thanks for getting rid of it for me!” Because what else can you do? Get angry? Make the person pay the price? It’s not going to bring the glass back. So we make the best of what we have, and we always try to make life a celebration. And then we clean up the glass.

Ezra is now 15, and Fields-Meyer has helped him find a way to channel his interests and obsessions through the use of technology to give him an outlet to express himself, and perhaps to have a future career. Next month, Ezra will be the published co-author of a children’s book E-MERGENCY with New York Times bestseller Tom Lichtenheld, based on an animation Ezra made when he was 12. I’m looking forward to reading it. The book cover is pretty cool.

The Difficulties of Communicating

September 10, 2011

This post is written by our second guest blogger, Jeremy Sicile-Kira.  Jeremy wrote this for his college newspaper, the Chariot,  and it was  published in August 2011. You can read more of Jeremy’s writing on his new website (soon to be expanded) or follow him on twitter at @Jeremyisms.

Having autism has deterred me from communicating with neurotypicals. Neurotypicals are people not like me; people who have what are considered normal behaviors. Their sensory processing is functional  so they can see, hear and feel normally.  Because I have sensory processing challenges, I can’t feel or see the physical space I am in.  I can’t see and hear at the same time so I don’t look at people when I am listening to them. People may assume because of this that  I am not listening or not interested, but that is not the case. As well, I can get  overwhelmed in noisy environments because of  my sensitive  auditory processing challenges. For me calling a person on the phone is no  easy matter because  the ability to talk is not a strong  ability I have. This is due to motor challenges. It takes great muscle control to speak. While  autism affects my ability to speak it has not hindered my ability to think.

Being  nonverbal has it’s advantages. For example people will stop talking if you don’t respond which is great when you don’t feel like listening. At least I have a good excuse. Kidding aside, I have great technology and support staff to help me communicate. But by the time my poor finger has typed a response, often the conversation in a group setting has moved on.

Sometimes I dread being in public places. While many people are understanding, some  frankly act weird. Like those that treat me like a train wreck: they dreadfully watch but are frankly happy it’s not happening to them, this life of having a disability. Getting a lot of attention can be awesome for the autistic community in general, but sadly if you ask autism advocates most  will tell you that not all press is good press. The  reality  is that most of us  would rather be unnoticeable than be noticed just for our autism.

Although I have challenges that make it difficult to communicate, I am very interested in getting to know my fellow students. Bravely feel free to talk to me when you see me. Just be patient while waiting for a response.

Autism College to present free live Q&A with author Tom Fields-Meyer

September 10, 2011

Autism College will present a free live Q & A on Monday, September 19, from 6:00 to 7:00pm PST with Tom Fields-Meyer, moderated by Chantal Sicile-Kira. Tom is the author of the recently published book: FOLLOWING EZRA: What One Father Learned About Gumby, Otters, Autism, and Love from His Extraordinary Son, moderated by Chantal Sicile-Kira. Sign up for this webinar at the bottom of this post. The publisher has generously agreed to send a free copy of the book to one of the Q & A participants, so send in a question and you may get more than just an answer!   

About the book, from the Following Ezra website:

When Tom Fields-Meyer’s son Ezra was a toddler and showing early signs of autism, a therapist suggested that the father allow himself time to mourn.

“For what?” he asked.

The answer: “For the child he didn’t turn out to be.”

That moment helped strengthen Tom’s resolve to do just the opposite: to celebrate the child Ezra was becoming, a singular boy with a fascinating and complex mind. Full of unexpected laughs, poignant moments and remarkable insights, Following Ezra is the riveting story of a father and son on a ten-year adventure, from Ezra’s diagnosis to the dawn of his adolescence. An engaging account of a father gradually uncovering layers of a puzzle, it rejoices in each new discovery and exults in the boy’s evolution from a remote toddler to an extraordinary young man, connected to the world in his own astounding ways.

Unlike other parenting memoirs, Following Ezra isn’t about a battle against a disease, nor is it a clinical account of searching for doctors, therapies or miracle diets. Instead, Fields-Meyer describes—with humor and tenderness—the wondrous, textured, and often surprising life one experiences in raising a unique child.

“This story will illuminate the experience of parenting a child with autism for those who don’t know it, and will resonate with those of us who know it all too well,” says novelist Cammie McGovern. “There are blessings along the way, and Tom Fields-Meyer depicts them beautifully.”

About the author, from  the  Following Ezra website:

Tom Fields-Meyer has been writing stories for popular audiences for nearly three decades, specializing in telling meaningful and worthwhile narratives with humanity, humor and grace. In twelve years as senior writer at People, he produced scores human-interest pieces and profiles of newsmakers. He penned articles on some of the biggest crime stories of the day (from the O.J. Simpson trial to the murder of Matthew Shepherd), profiled prominent politicians and world leaders (Nancy Pelosi, Pope John  Paul II, Sen. Ted Kennedy), and demonstrated a pitch-perfect touch writing tales of ordinary people overcoming life’s challenges in inspiring and compelling ways.

Tom also lends his skills to help others to put their compelling personal narratives into words. He teamed up with the late Eva Brown, a popular speaker at The Simon Wiesenthal Center’s Museum of Tolerance, to write Brown’s memoir, If You Save One Life: A Survivor’s Memoir (2007). Wiesenthal executive director Rabbi Marvin Hier called the book “very significant and meaningful…an everlasting and important legacy…and a reminder to future generations that championing tolerance, justice and social change are everyone’s obligation.”

Tom collaborated with Noah Alper, founder Noah’s Bagels, the successful West Coast chain, on Alper’s memoir: Business Mensch: Timeless Wisdom for Today’s Entrepreneur (2009). Publisher’s Weekly said: “This earnest book shines with Alper’s conviction, business savvy and decency.”

In September 2011, NAL/Penguin Books will publish Tom’s memoir, Following Ezra: What One Father Learned About Gumby, Otters, Autism, and Love from His Extraordinary Son. Full of tender moments and unexpected humor, the book tells the story of a father and son on a ten-year journey from Ezra’s diagnosis to the dawn of his adolescence. It celebrates Ezra’s evolution from a remote toddler to an extraordinary young man, connected in his own remarkable ways to the world around him.

Tom previously worked as a news reporter and feature writer for the Dallas Morning News, where he covered the kinds of stories that happen only in Texas (shootouts in Country-Western dance halls, culture pieces on the State Fair) and once was dispatched to Nevada to investigate a road designated by AAA as “America’s loneliest highway.” As a senior editor at the Chronicle of Higher Education, he traveled the nation’s campuses and once convinced his editor to send him on a 10-day junket aboard a schooner in the Bahamas (an assignment he came to regret, not just because of seasickness). Tom’s writing has appeared in dozens of publications, including The New York Times Magazine, The Wall Street Journal, the Los Angeles Times and Esquire.

A graduate of Harvard University, Tom lives in Los Angeles with his wife, Rabbi Shawn Fields-Meyer, and their three sons.

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