The Golden Hat : Q & A with Margret D. Ericsdottir moderated by Chantal Sicile-Kira

The Golden Hat

Why did  Kate Winslet ask  over 100 celebrity friends including  Oprah, George Clooney, Rosie O’Donnell, Tom Hanks, Kobe Bryant and Leonardo DiCaprio,  be photographed wearing a Golden Hat for a book that includes photos of eleven non-verbal youngsters with autism wearing the same hat?

What are the long term goals of the Golden Hat Foundation?  What goals do you have for your youth’s future? What are your child’s long term goals?

Join the conversation on May 14 about creating  A Full Life with Autism when  Margret Dagmar Ericsdottir, President & CEO of the Golden Hat Foundation joins Moderator Chantal Sicile-Kira  to discuss  these topics.  The  one hour Q & A  on Monday May  14, 2012 will take place from 6:00 pm – 7:00 pm PST  (9:00 pm to 10:00 pm EST). Sign up for the Autism College newsletter to receive instructions on how to participate and send in your questions. Instructions will be sent via newsletter before the Q & A  takes place. (Already registered? Hold tight, the participation link will arrive soon).

The Golden Hat Foundation is a non-profit organization dedicated to eliminating barriers for people with autism around the world, and creating an environment that holds these individuals as intellectually capable.

Kate Winslet and Margret D. Ericsdottir

Guest: Margret D. Ericsdottir is the President & CEO of the  The Golden Hat Foundation; Founder Frontier Filmworks; Co-Author, The Golden Hat: Talking Back to Autism; Advocate for Individuals with Autism; Mother of Keli, 14-year-old with nonverbal autism.  Margret Dagmar Ericsdottir, MBA, had a successful career in business and held various executive positions in Icelandic companies. Then, in 1997 Margret’s youngest son Keli was born and diagnosed as having severe autism at the age of four. The sudden and profound changes in her family prompted Margret to shift her focus from career-related pursuits to caring for Keli. In 2006 Margret founded Frontier Filmworks, and made the documentary, A Mother’s Courage: Talking Back to Autism, which describes her family’s journey.

The  award-winning actress, Kate Winslet, narrated the documentary, and subsequently co-authored The Golden Hat: Talking Back to Autism, in which celebrities and some non-verbal individuals with autism are photographed wearing a “golden” hat.

Moderator:  Chantal Sicile-Kira is the founder of Autism College, author of five books on autism. Her latest book A Full Life with Autism, was co-authored with her son, Jeremy Sicile-Kira whose photograph appears in The Golden Hat.

Expressing Gratitude

Melissa Crothers, Shapar Ostovar, Steve Crothers, Chantal

Recently I had a discussion with my family doctor about keeping good mental health in general for all types of people (college students, parents) and  she mentioned the usual items : regular exercise, good diet, and plenty of sleep. But then she mentioned another item that research shows is important to good mental health : having gratitude. Each day spending a few minutes acknowledging what you are grateful for, can improve your mental health. Interesting concept, right?

I know there are days when that “gratitude list” seems pretty short. For some the list consists of being thankful they got through a day of  not having to  call  the doctor,  or being grateful that the respite worker showed up so they could leave the house to do the shopping.  But really, every day there is something to be grateful for, and our children (on and off the spectrum) can learn to focus everyday for a few minutes on what they have to be grateful for – it could improve their mental health.

Right now, I would like to express gratitude about all the people over the years who have shown interest in my son, or who have helped him become the person he is today.  Many of these people were at the Poseidon Restaurant in Del Mar on Monday night to help celebrate the release of Jeremy’s first book, A Full Life With Autism. We are grateful to be surrounded by such wonderful people and to be part of this local community. I’ll be posting more photos as time goes on; I’ve put a few here.

So tell me, what can you express gratitude  for today?

Dr. Carl Hillier's Team

Join the Conversation – A Full Life With Autism

Jeremy and I wrote A Full Life With Autism in order to empower families. We hope that our experience – from the point of view of both a  young man reaching adulthood, and  a parent helping to prepare him for the future – will help you think about all your child needs – no matter his age- to prepare for the adult years down the road.

We’ve also highlighted the experiences of others,what organizations are doing to help prepare a brighter future, and what life skills a person needs to be successful as an adult.

We’ll be writing here often and we hope that you will join the conversation about creating a full life with autism. Your comments, questions and suggestions are most welcome here.

If you’ve read any of my books and articles, or Jeremy’s, then you know about us. Tell us your story. You are not alone, and we want to hear from you!

It takes a village to raise a child, and a community to make an enjoyable life.

Together, we can make a difference. Join the conversation!

Q & A Webinar: Temple Grandin, Chantal & Jeremy Sicile-Kira : A Full Life with Autism

Temple Grandin and Claire Danes

On Saturday, April 7 th from 8:00am PST to 9:30am PST (11:00am EST to 2:00am EST), Visiting Professor Temple Grandin will answer questions with Chantal Sicile-Kira  moderating. Then, for those who want to stick around,  from 9:45am PST to 11:15am PST (12:45pm EST to 2:15pm EST) Chantal and Jeremy Sicile-Kira will be answering questions in regards to their new book, A Full Life With Autism for which Temple wrote the foreword.

This is an opportunity to ask Temple Grandin questions, and get insight as to what is important for preparing our children for life as successful adults. Chantal and Jeremy will answer any questions you may have about raising a child with autism, and the transition to adulthood.  Register for our newsletter to sign up. (If you are already signed up, you will be receiving instructions shortly).

What questions do you have? Let us know, we’ll answer them!

Temple Grandin, PhD, is a doctor of animal science and professor at Colorado State University, bestselling author, and consultant to the livestock industry on animal behavior. As a person with high-functioning autism, Grandin is also noted for her work in autism advocacy and is the inventor of the squeeze machine designed to calm hypersensitive people.  Grandin is listed in the 2010 Time 100 list of the 100 most influential people in the world, and the subject of the Emmy award winning  HBO documentary, “Temple Grandin.” Temple is the author of many books including, The Way I See It, Developing Talents, and Animals in Translation.

Chantal and Jeremy Sicile-Kira

Jeremy Sicile-Kira was diagnosed severely autistic as well as mentally retarded when he was born in 1989. In 2010, he gave a commencement speech at his high school graduation.   Jeremy  co-authored a book A Full Life with Autism ( Macmillan, March 2012) as a  guide for parents and educators helping those on the autism spectrum transition  into meaningful and independent lives.  Jeremy writes for  autism magazines, and his new website, www.JeremySicileKira.com.  He is one of three national Youth Advocates of the Autistic Global Initiative, a project of the Autism Research Institute. In 2007, Jeremy was highlighted on MTV’s documentary series True Life in the episode, “I Have Autism,” which won a 2007 Voice Award. Follow him on Twitter.

Chantal Sicile-Kira is an award-winning author, columnist, and autism advocate, as well as the founder of of AutismCollege.com which provides practical training  to parents and educators. Her latest book, is  A Full Life With Autism, co-authored with her son, Jeremy.  Their  story has been covered by a wide variety of media, including NPR, PBS, MTV, The Chicago Tribune, Newsweek, and Fox News.

 

13 Things to Keep in Mind as Your Child with ASD Reaches Adolescence

 Often I get emails from parents who  think their child is getting worse when they hit the double digits.  That’s what it seems like when puberty hits!  So I’m reprinting this article I wrote about adolescence that  first appeared in the Autism – Asperger’s Digest. The article appeared a few years ago, but the worries and challenges faced by parents are the same as they were when I wrote it. I hope you find it useful.

As well to provide an opportunity for parents and educators to have more in-depth information, I’ll be giving a course on Adolescence and Autism here in the  Autism College Classroom on September 10, 17, 24  from 6:00 pm to 8:00 pm PST  (9:00 pm to 11:00 pm EST)   Participation is limited so that participants can have time to ask questions and get advice.  Click here for a description,  Click here forpricing and to enroll. Questions? Email me at Chantal@AutismCollege.com. 

 13 Things to Keep in Mind as Your Child with ASD Reaches Adolescence

0009Living with a child on the autism spectrum day after day, parents often miss the little changes that are so typical of all kids’ development. One day I looked at my son, Jeremy, and realized he was already up to my chin. And what was that – facial hair? His behavior started to change as well. As a young child he’d always been compliant; we spent years trying to teach him to say “no” and mean it. So I was thrilled when he just didn’t want to do what we wanted him to do anymore.

Autism and adolescence: each on their own can be interesting and challenging, to say the least. Together, they form a volatile mix that can arouse daily anxiety in even the most prepared adult. If you live with or work with a pre-teen with an autism spectrum diagnosis, attention to the following 13 points can help you and your child navigate those years a little more smoothly. One caveat: it doesn’t matter the functioning level of your child with autism or Asperger’s; everything here applies. You’ll work them out differently depending upon his or her cognitive, emotional and/or communication abilities, but don’t overlook them, thinking they don’t relate to you child. They do!

  1. Noncompliance: it may not be autism, it may be adolescence. Whether or not they have autism, there’s a definite ‘shift’ in behavior and personality when children turn into teenagers. Wanting your attention changes to wanting their independence. For kids on the spectrum, this behavior change may look like non-compliance; they don’t follow through on your requests as before. But it’s actually a normal part of their development, entirely aside from their autism. As a parent it’s important to support your teen as he struggles to become his own person, and even though it may be hard to appreciate, this is a positive development. After years of being taught to do as he is told, your teen needs to start learning that it is acceptable at times to say ‘No,’ or he might find himself in dangerous situations with peers or others looking for an easy victim to prey upon.
  2. Teenagers need to learn to make their own choices. Giving choices to your growing teen will teach him about decision making and accepting the consequences of his choice (good and bad), as well as help him realize he will eventually have more control over his own life. This applies no matter what the functioning level of the child. Offer him choices, regularly, and abide by the choice he makes. Remember, as he gets older he will want and need to be more involved in his life and his transition planning. By letting him make choices now (within your parameters at first) you are teaching him valuable life skills.
  3. Chores teach responsibility. At any age, it’s good to teach children that being part of a group (whether it is a family, a work group, or a community) brings with it a certain level of responsibility. If your pre-teen has somehow been exempt from chores and group responsibility, let this slide no longer. Teens need to learn that living in a house with other people entails responsibilities as well as pleasures. Chores teach the teen to be responsible for himself, to live independently, as well as foster self-worth and self-esteem. ALL individuals with autism can be taught to contribute at some level. Do make sure your child has opportunities to do so.
  4. Watch out for seizures. One of every four teenagers with ASD will develop seizures during puberty. Although the exact reason is not known, this seizure activity may be due to hormonal changes in the body. For many the seizures are small and sub-clinical, and are typically not detected by simple observation. Some signs that a teen may be experiencing sub-clinical seizures include making little or no academic gains after doing well during childhood and preteen years, losing behavioral and/or cognitive gains, or exhibiting behavior problems such as self injury, aggression and severe tantruming. (Read my post about a useful book here).
  5. Talk to your child about his/her changing body. Imagine how scary it must be to realize your body is going through some strange metamorphosis, you don’t know why and there is nothing you can do about it. Whether your child has Asperger’s Syndrome and has sat through hygiene classes at school, or he is more impacted by autism and you’re not sure how much he understands, it is important to discuss the changing male and female body in a simple way he can understand. Otherwise, your teen may be overly anxious and agitated when she starts menstruating or when he has wet dreams. Visuals that include photos or drawings and simple words may be helpful, especially at the beginning. Be concrete and don’t overwhelm – this is certainly not a one-time talk!
  6. Masturbation: a fact of life. Let’s face it; masturbation is a normal activity that almost all teenagers engage in. Once discovered, it is an activity hard to stop, especially for individuals who enjoy self-stimulatory activities and can be obsessive compulsive, as are many people on the autism spectrum. The best approach is teaching your teen that this is a private activity to be done only in private at home, in a designated place such as his bedroom.
  7. Relationships and sexuality: topics that need to be discussed. Sexuality is a topic that most parents are not comfortable discussing with their children, even their neurotypical teens. However, it is necessary to talk to your teen on the spectrum about sex and the many types of relationships that exist between people. It is naïve of parents to think that because their child has autism s/he won’t need this information. Teens talk, and invariably your child will be hearing about it from their NT peers at school. Whatever the functioning level of your child, he needs to be taught about appropriate/inappropriate greetings, touch and language when interacting with members of the opposite or same sex. Don’t leave this important part of his social-emotional development to locker room education.
  8. Self-regulation is important for life as an adult. An important skill for every teen to learn is the ability to control his or her reactions to emotional feelings and sensory overload. Hopefully, by the time they are teens your child or student has learned to recognize their feelings and impending emotional or sensory overload, and ways to handle the situation. In school this could mean practicing self-calming techniques or signaling to the aide or teacher they need a break and having a ‘safe place’ or quiet room to go to. At home, teens should have their own quiet spot to retreat to when overwhelmed. And parents: respect their need to do so!
  9. Self-esteem is the foundation for success. While children are young, start building this foundation by emphasizing strengths rather than weaknesses. If your child with ASD, no matter what his age, has low self-esteem pay attention to the messages he is receiving from people around him at home, at school and in the community. In all likelihood, the message he is hearing is that he can’t do anything right. Teens need to be told when they are acting, responding and communicating appropriately, as well as that their (considerable) efforts to do so are appreciated. Where there are challenges, it is up to us, as the adults in their lives, to help them find strategies to be effective. Teens can be at high risk for depression. Parents should ensure their teen knows they are valued and loved under all circumstances, not just when they ‘get it right.’
  10. Self-advocacy is required for independence. Eventually your teen will be living away from home and will not be under your protection. He needs to know how to speak up for himself. Start this training while he is in school. IDEA 2004 mandates that students be invited to participate in transition planning and this supportive environment can be good ‘training ground.’ Make sure your teen is aware of his strengths and weaknesses and how he is different from others. In this way the teen can gain a real-life understanding of areas he may need to improve upon or that require assistance from others, and areas in which he is proficient, or that are his strong points to build upon.
  11. Bullying is a serious problem and should be treated as such. Bullying can range from verbal taunts to physical encounters. At any level it is not an individual problem, but a school problem. Unless your child’s school strongly enforces a no-bullying policy from the principal on down, your teen may have a difficult time. Teens on the spectrum are poor at picking up social cues, understanding ulterior motives, sarcasm, and predicting behaviors in others. As such, they unknowingly put themselves in unsafe situations. At other times their unconventional grooming or dress, often stilted language and rule-bound obsessions can render them targeted victims. Ensure your teen learns the meaning of non-verbal behaviors and the hidden curriculum (i.e. the unstated rules in social situations). Enlist the help of a neurotypical teen or sibling when shopping for clothes or getting a new hairstyle so your teen has at least a semblance of ‘fitting in’ with his peer group.
  12. The Individualized Transition Plan (ITP) is your teenager’s business plan for the future. Second only to the early intervention years, the transition years in high school are the most important years in your child’s educational life. Skills your teen needs to learn to survive and thrive as an adult, in adult settings, should be the focus of this time in school. The ITP, mandated through federal special education law, is the roadmap for your teen’s future. Once your child graduates or ages out of high school, mandated services are few and programs have waiting lists that extend into years. Spend time (and include your child as much as possible) thinking about what he wants to be doing when high school ends, and 5-10 years from now. Then plan how he will get there and what skills will be needed. This “futures planning” should drive the goals written into his IEP.
  13. Parents, you need to take time out for yourself; it’s good for your child too. With all the responsibilities you have as a parent of an adolescent on the spectrum, you need to take some time out for yourself. Whether it is a short break you take every day to go for a walk, exercise or engage in a favorite activity, or a weekly evening out with your significant other, you need to recharge your batteries. This is also positive modeling for your pre-teen and teen. It teaches that life can be stressful and overwhelming at times for all of us, and that we need to develop ways to manage our stress, and enjoy life, not just l

Just the other day I was looking around the house for Jeremy. I knocked on his bedroom door. He opened the door a crack, one of his Guitar World magazines in hand. I could hear Dave Matthews playing in the background. “Go away, Mom,” he said, and I did, with a little smile on my face. Jeremy is significantly impacted by his autism. Yet moments such as this remind me that he is first and foremost a teenager, with his own personality, his own wants and wishes. He’s on the road to becoming his own person, figuring things out in preparation for adulthood. I wouldn’t have it any other way.

For more information on Adolescence and Autism, sign up for my on-line course.

Autism in the House? Keep Calm and Carry On

“ I am frankly not acting nicely to new support staff.”

When it comes to autism, some things get easier and some things get harder as they get older.  Neurotypicals at 23 can be ornery, and so can 23 year olds on the spectrum.  Some things don’t change.

Although the transition to the teen years can be difficult; the transition to adulthood can be even more challenging. It’s a balance between giving them the freedom to make their own decisions, and providing the familiarity of structure  they seem to need.  Some days can be tough. On those days, I think of the British war poster given to me by a friend that I have hanging in my office.

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

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

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.

Preventing and Eliminating the Use of Restraints and Seclusion in Schools

Successful reforms have taken place in health care settings, in nursing homes, and in programs treating mental illness, but currently there is no federal law that prohibits in public and private school the use of face down restraints, aversive interventions, restraints that restrict breathing, and locked seclusion.  These practices can result in serious injury, psychological trauma, and even death.

What can we do about this? the first step is to get informed. On Saturday, February 18, 10:00 – 11:30 am PST (1:00 pm – 2:30 pm EST) Pat Amos M.A.,  will be presenting on:  Preventing and Eliminating the Use of Restraints and Seclusion To register for free, go here.

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

Description of Presentation Topic:  Preventing and Eliminating the Use of Restraints and Seclusion

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.

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

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.