Autism Spectrum Disorder Archive 2013
Ann England, M.A. CCC-SLP-L
Ann has 27 years of special education experience and has extensive training and certification in the assessment and teaching of students with an Autism Spectrum Disorder (e.g., TEACCH, PECS, ADOS, etc.) She participates on a multidisciplinary assessment team at the Diagnostic Center to determine if students have an Autism Spectrum Disorder. She also provides the all day training “Teaching Students with an Autism Spectrum Disorder” to school staff throughout northern California. Additionally, she provides onsite consultation and mentoring to school district administrators and teaching teams to assist in the development and implementation of evidence-based public school programs for students with an Autism Spectrum Disorder. Ann has served on several California Department of Education committees related to Autism Spectrum Disorders and most recently was invited to participate on the Task Force on Education and Professional Development of The Legislative Blue Ribbon Commission on Autism.
Click a topic below to expand the full question and answer.
My son with ASD has wandered off several times and it’s really frightening for us as a family. We are not neglectful but he is so fast. We’ve done so many things to try and prevent this but obviously not everything since it’s happened twice. I’m afraid something awful is going to happen next time.
Thanks for any help.
I can only imagine how frightening it is to suddenly realize that your son has wandered off. When parents of children with an ASD are interviewed they report that wandering is one of the most stressful ASD behaviors and many parents suffer sleep disruption due to fear of their child eloping/wandering.
I want you to know that you’re not alone in that roughly half of children with an ASD attempt to elope (wander) from a safe environment, which is nearly four times higher than their unaffected siblings. 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. For sure, these are scary statistics for any parent. We also know that more than one third of children with an ASD who wander/elope are never or rarely able to communicate their name, address, or phone number.
Fortunately, Autism Speaks has some great information on how to prevent wandering and what to do if it happens.
Six Tips to Help Prevent Wandering and Wandering-Related Tragedies
From AWAARE: Autism Wandering Awareness Alerts Response Education Coalition
1. Secure Your Home
Consider contacting a professional locksmith, security company or home improvement professional to promote safety and prevention in your home. You may find it is necessary to prevent your loved one from slipping away unnoticed by installing secure dead bolt locks that require keys on both sides, a home security alarm system, inexpensive battery-operated alarms on doors, placing hook and eye locks on all doors above your child's reach, fencing your yard, adhering printable STOP SIGNS to doors, windows and other exits, etc.
2. Consider a Tracking Device
Check with local law enforcement for Project Lifesaver or LoJak SafetyNet services. These tracking devices are worn on the wrist or ankle and locate the individual through radio frequency. Various GPS tracking systems are also available.
3. Consider an ID Bracelet
Medical ID bracelets will include your name, telephone number and other important information. They may also state that your child has autism and is non-verbal if applicable. If your child will not wear a bracelet or necklace, consider a temporary tattoo with your contact information.
4. Teach Your Child to Swim
Swimming lessons for children with special needs are available at many YMCA locations. The final lesson should be with clothes on. Remember: teaching your child how to swim does not mean your child is safe in water. If you own a pool, fence it and if neighbors have pools, let them know of these safety precautions and your child's tendency to wander. Remove all toys or items of interest from the pool when not in use.
5. Alert Your Neighbors
It is recommended that caregivers plan a brief visit with neighbors to introduce their loved or provide a photograph. Knowing your neighbors can help reduce the risks associated with wandering. See the caregiver tool kit for resources to use to alert them.
6. Alert First Responders
Providing first responders with key information before an incident occurs may improve response. Informational handouts should include all pertinent information and be copied and carried with caregivers at all times. Circulate the handout to family, neighbors, friends and co-workers, as well as first responders. See the tool kits for resources to use to alert them.
I encourage you to download the FREE Big Red Safety Toolkit and review the Autism Speaks information about wandering (see resources); I think these resources will be very helpful!
Thank you for your very important question!
REFERENCES and RESOURCES:
Big Red Safety Toolkit
Preventing Wandering: Resources for Parents and First Responders
- Interactive Autism Network Research Report: Elopement and Wandering (2011)
- National Autism Association, Lethal Outcomes in ASD Wandering (2012)
New Prevalence Data about ASD Released by CDC
On March 27, 2014, the Centers for Disease Control and Prevention (CDC) Released New Statistics: Estimates 1 in 68 children has been identified with ASD.
The CDC estimates that 1 in 68 children (or 14.7 per 1,000 eight-year-olds) in multiple communities in the United States has been identified with autism spectrum disorder (ASD). This new estimate is roughly 30 percent higher than previous estimates reported in 2012 of 1 in 88 children (11.3 per 1,000 eight year olds) being identified with an autism spectrum disorder. The number of children identified with ASD ranged from 1 in 175 children in Alabama to 1 in 45 children in New Jersey.
The surveillance summary report, “Prevalence of Autism Spectrum Disorder among Children Aged 8 Years – Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2010,” was published on March 27, 2014 in the CDC’s Morbidity and Mortality Weekly Report. Researchers reviewed records from community sources that educate, diagnose, treat and/or provide services to children with developmental disabilities. The criteria used to diagnose ASDs and the methods used to collect data have not changed.
The data continue to show:
- ASD is almost five times more common among boys than girls: 1 in 42 boys versus 1 in 189 girls.
- White children are more likely to be identified as having ASD than are black or Hispanic children.
- Levels of intellectual ability vary greatly among children with autism, ranging from severe intellectual challenges to average or above average intellectual ability. The study found that almost half of children identified with ASD have average or above average intellectual ability (an IQ above 85) compared to a third of children a decade ago.
- Children with ASD are diagnosed after age 4, even though ASD can be diagnosed as early as age 2.
For additional information on Autism and Developmental Disabilities Monitoring (ADDM) Network and this report, visit www.cdc.gov/autism.
Visual Supports for the Home
My son with ASD is doing great at school because his teacher is using a lot of visual supports that help him a lot. However, I’m not really sure how to make these visual supports work at home.
I appreciate any ideas you have that will help us here at home.
Yes, visual supports are an evidence-based practice (EBP) that are very helpful for most individuals with an ASD. It’s great that you are eager to implement those visual supports that are working in the school at home, too! For sure, the home setting is very different than the school setting and I understand that it may be a bit of a challenge to adapt the visual supports to what goes on in the home.
I just recently discovered a great resource developed by the Indiana Resource Center for Autism (IRCA). One of their staff, Kristie Lofland, with the support of several others, has created, “The Autism House: Visual Supports for the Home”. Although this simulated house, set up with visual supports to aid individuals on the autism spectrum as they go about their daily routines, happens to be located in Indiana, IRCA has posted a detailed video tour of the house!
There are two 12 minute videos of the simulated house that show and explain how to implement various visual supports in a living room, bedroom, dining room/homework area, kitchen, bathroom, and outdoor area. I think these short videos are excellent and will offer you some really great ideas!
After you are inspired by seeing all these great ideas for using visual supports in the home you may want to check out the other visual support resources I’ve listed in the References/Resources. The National Professional Development Center for ASD, Autism Internet Modules and Autism Speaks also has some great resources for families who want to implement visual supports in the home!
Finally, I’d like to encourage you to ask your son’s teacher or other member of the IEP team for assistance, too!
REFERENCES and RESOURCES:
The Autism House: Visual Supports for the Home
Kristie Lofland, Indiana Resource Center for Autism
Autism at Home: Visual Supports
Autism Internet Modules
Evidence-Based Practice: Visual Supports
National Professional Development Center on Autism
The Visual Supports and Autism Spectrum Disorder Took Kit
Update on evidence-based practices for ASD
Is it true there are new evidence-based practices for ASD? I just learned about the other ones but if there’s something else I need to know would you let me know?
Yes, the National Professional Development Center on ASD has recently released the results of their research and updated the Evidence-Based Practices (EBP) for ASD. They have provided the New EBP Report 2014 and EBP Fact Sheets on their website (see References). Check them out at http://autismpdc.fpg.unc.edu/.
We will be posting an updated matrix of these newest EBPs on the CAPTAIN website soon so keep checking at: www.captain.ca.gov.
Thank you for your great question and staying up-to-date!
National Professional Development Center on ASD
Update on CAPTAIN activities
I heard there was a conference for CAPTAIN in October. I didn’t get to go but I want to know what was covered so I can stay up-to-date because I work with students with an ASD.
Yes, there were two CAPTAIN Summits last October one in Northern California and one in Southern California. And, yes, of course, I will share with you all that was covered! I have posted below a submission to a newsletter that I authored that has all the details! Hopefully, the CAPTAIN Cadre member in your area that was nominated to attend will share with you, too! Check the CAPTAIN website at www.captain.ca.gov to see who your representative is and maybe you could contact them!
What is CAPTAIN?
The Diagnostic Center, Northern California (DCN) has played an integral role in collaborating with others to develop and launch CAPTAIN, a cross agency network developed to support the understanding and use of evidence based practices (EBP) with individuals affected by an Autism Spectrum Disorder (ASD) in California. The agencies involved include: Diagnostic Centers, University Centers for Excellence in Developmental Disabilities (UC Davis MIND Institute and University of Southern California), Regional Centers/Department of Development Services, Special Education Local Plan Areas (SELPAs), County Offices of Education, Local Education Agencies, California Department of Education, and Family Resource Centers.
Past and current legislation, policy and position statements require all service providers to implement research based/evidence-based practices (EBPs). That is, treatment selection needs to be made by a team of individuals (including the family) to consider the unique needs and history of the individual with an ASD, and then use that information to carefully select those EBPs that have evidence of efficacy demonstrated by rigorous research design. Unfortunately, it has been the standard to implement popular, yet unproven, interventions, for students with an ASD. However, we now welcome the much needed research-based findings of the National Professional Development Center and the National Standards Project on ASD. CAPTAIN is committed to increasing the knowledge of service providers about these EBP resources because it:
- helps us know which treatments have evidence of effectiveness and which treatments do not
- allows us to make informed decisions when we select treatments
- provides us with the opportunity to support individuals on the autism spectrum in reaching their full potential.
DCN is proud to have developed and host the CAPTAIN website: www.captain.ca.gov. This website serves as a clearinghouse to provide evidence-based practice resources, research materials, information, and practices regarding the education of students with an ASD. We are also proud that this website actually fulfills one of the recommendations of the California Legislative Blue Ribbon Commission and the Superintendent’s Autism Advisory Committee. Visit the CAPTAIN website to find links to the Evidence Based Practice Resources, Leadership Team and CAPTAIN Cadre Members and Partners as well as CAPTAIN Summit information and training resources from our Summits.
CAPTAIN SUMMITS OCTOBER 2013
This past October around 300 invited interagency individuals from public schools, Regional Centers and Family Resource Network, participated in two Summits:
- October 3-4, 2013: Located at Riverside County Office of Education
- October 17-18, 2013: Located at San Joaquin County Office of Education
CAPTAIN SUMMIT CONTENT
Evidence-Based Practices (EBP):
The invited CAPTAIN Cadre came from across the state of California to learn about EBPs for individuals with an ASD. The two day Summits focused primarily on instructing the CAPTAIN Cadre about the National Professional Development Center (NPDC) on ASD’s 24 Evidence-Based Practices, tools and resources and the Established Treatments from the National Autism Center’s (NAC) National Standards Project.
The participants were also provided with presentations by professionals from various demonstration sites located throughout California about how they have successfully implemented EBPs in their “real life” programs:
- McFall Preschool, San Joaquin County SELPA
- Folsom Cordova USD Parent Implementation Program, Folsom Cordova SELPA
- LAUNCH Preschool, Southwest SELPA
- Marsh Middle School, Chico USD, Butte County SELPA
- Viegas Middle School, Riverside County SELPA
- Glendora High School, East San Gabriel Valley SELPA
Guest speakers provided expert presentations about specific “hot topics”:
- DSM-5: Robin Hansen, MD, from UC Davis MIND Institute/Center for Excellence for Developmental Disabilities, explained the changes in diagnosing ASD using the newly released DSM-5 criteria
- Changes to health insurance for ASD treatment (Autism Health Insurance Mandate/Steinberg SB946): Katie Hornberger, attorney and Director of Disability Rights CA, Office of Clients' Rights Advocacy, Tara Sizemore-Hester, Autism Services Coordinator, Valley Mountain Regional Center and Marcy Gutierez, LLP, Senior Counsel Lozano Smith, Sacramento provided information about how this new law affects treatment decisions
- California’s Common Core State Standards (CCSS) and the Student with an ASD: Ann England, Diagnostic Center, Northern California, CDE, explained the new CCSS, how the student with an ASD will be affected, and how to use EBPs in supporting the student and the service delivery providers (e.g., teachers, related services, etc.) to ensure educational benefit
Collaboration and Planning Time:
In addition to learning EBPs and updates in the field of ASD, the invited CAPTAIN Cadre were provided time to network, collaborate and plan how they were going to work together and disseminate and train others in their local and regional areas they represent and serve. That is, the CAPTAIN Cadre members were nominated from SELPAs, Regional Centers and Family Resource Centers/Family Empowerment Centers throughout the state of California in January 2013. The number of Cadre slots per agency was determined using a formula developed by the CAPTAIN Leadership Team based on the capacity for the annual Summits and enrollment availability in the online Foundations of Autism 10 hour online course that was a requirement for each CAPTAIN Cadre member. CAPTAIN Cadre members who attended the Summits provided a voice and perspective representative of their constituency and agency; the Cadre members are expected to return to the area they serve locally and serve as a "trainer of trainers" to disseminate the information they learned at the Summit. One of the goals of CAPTAIN is to build capacity in those who serve individuals and their families facing the challenges of ASD facilitating/fostering interagency collaboration and planning time.
CAPTAIN: WORKINGTOWARD A COMMON GOAL
We hope you are as excited about CAPTAIN as we are! It is a wonderful and amazing opportunity to collaborate with many different agencies toward a common goal: to establish an interagency network of dedicated individuals to disseminate information that would result in an increased awareness of and equitable access to EBPs that improve outcomes for individuals with an ASD across the state of California. That is, our outcome expectation of CAPTAIN is that through our collaborative efforts to increase networking and knowledge about EBPs, individuals with an ASD will be better able to participate and contribute to society as independently and as fully as possible. In addition, as the California Senate Select Committee on Autism and Related Disorders states so eloquently, “Together we can bring hope and opportunity to many of our families, friends, and neighbors who are facing the challenges of ASD.”
California Senate Select Committee on Autism and Related Disorders http://autism.senate.ca.gov/
Centers for Disease Control
National Autism Center, National Standards Project
National Professional Development Center on ASD
ABOUT THE ASK A SPECIALIST AUTHOR:
Ann England, M.A., CCC-SLP-L is the Assistant Director of the Diagnostic Center, Northern California, CDE. She is also a leader of CAPTAIN, provides professional development throughout California and nationally on the topic of ASD and has served on the California Legislative Blue Ribbon Commission on Autism: Task Force on Education and Professional Development, and is a lead contributor to ACSA’s ASD Goals Aligned to the Common Core Guide. Additionally, she is the author of Ask A Specialist-ASD at www.askaspecialist.ca.gov and maintains the CAPTAIN website www.captain.ca.gov. You can reach Ann at email@example.com
How to interact with an adult with an ASD
I work with older students with an ASD in our district’s 18-22 year old program. I’m trying to get everyone to see that just because they have an ASD they should be interacted with according to their age not according to their disabilities or developmental age. Does this make sense? Is there a way I can help my aides, workability people, school staff, peers, well just about everybody, learn how to interact with my students more appropriately?
What a great question! It makes me so happy to hear that you really understand that working with individuals with an ASD is a two-way street; we teach the individuals to have competency in the areas of social communication and social interaction to the best of their ability and we also need to inform and teach others who interact with individuals on the autism spectrum, the ways they can be supportive; it’s a collaborative effort! It just so happens that the May Institute recently published some helpful guidelines developed by Scott Chausee and Teka Harris on how to keep communication respectful and productive for all parties:
5 Ways to Support Adults on the Autism Spectrum When Engaging in Conversation
- Address him or her as you would an adult, not a child. Do not make assumptions about a person’s cognitive skills. An individual’s disability may be more language-based and not related to their ability to comprehend the content of the conversation. In other words, a person may understand every word you say, but may have difficulty responding verbally.
- Avoid using words or phrases that are too familiar or personal. For example, terms like “honey,” “sweetie,” “cute,” and “adorable,” even when intended as endearments, can come across as demeaning or disrespectful to any person, but particularly to someone working to establish his or her independence.
- Say what you mean. When interacting with an adult with ASD, be literal – clear and concise. Avoid the use of slang, nuance, and sarcasm. These forms of communication may be confusing and not easily understood.
- When asking a question, wait for a response. If someone doesn’t respond immediately to your question, do not assume they haven’t heard or understood you. Just like typical adults, individuals on the autism spectrum sometimes need a little more time to absorb and process information before giving you their response.
- Don’t speak as if the person is not in the room. You may find yourself in a group setting that includes someone on the autism spectrum. As in any other social situation, do not talk about the person as if he or she is not in the room. In a group setting with family members, caregivers, teachers, or others, it is easy to be drawn into this trap. Model the appropriate behavior; this will help inform others on how to be more supportive of adults with autism in these kinds of situations.
I think this is a great resource and I hope you, too, find it helpful. In addition to those suggestions, encourage the communication partner to support “self-determination” by allowing and encouraging the individual to make choices and participate in decision-making. For example, if you’re deciding where to go for lunch, which movie to see, which school sporting event to attend, etc., always ask the individual for their input instead of deciding for them! I can envision using these guidelines as talking points for either an individual discussion or an in-service with co-workers, job coaches, classmates, aides, peers, teachers, etc.
Good luck! If you use this resource let me know how it goes!
May Institute: www.mayinstitute.org “5 Ways to Support Adults on the Autism Spectrum When Engaging in Conversation” written by Scott Chausse, M.Ed., Director of Vocational Services at the Todd Fournier Center for Employment Training and Community Inclusion in Massachusetts, and Teka J. Harris, M.A., BCBA, Clinical Director for the May Center for Adult Services in Western Massachusetts and published on the May Institute website April 22, 2013
Resource for parents of a child with ASD
I heard there was a distance learning resource for parents with a child with ASD but I can’t find it when I do a Google search! Do you know about this resource?
That’s so great that you are looking for resources for parents and caretakers of a child with an ASD! It is so important that we provide good quality evidence/research based information to parents!
I think you might be talking ADEPT (Autism Distance Education Parent Training) developed by the Center for Excellence in Developmental Disabilities (CEDD) at University of California, Davis MIND Institute.
There are two ADEPT Modules that you can provide a parent or you could even use these resources to lead a parent group:
Module 1: Strategies for Teaching Functional Skills (English and Spanish)
Module 1 Introduction
Lesson 1: The ABCs of Skills Teaching
Lesson 2: Understanding Reinforcement
Lesson 3: Using Reinforcement Effectively
Lesson 4: Planning and Preparation
Lesson 5: Creating a Task Analysis
Lesson 6: Prerequisite Skills
Lesson 7: Prompting and Chaining (Part 1)
Lesson 8: Prompting and Chaining (Part 2)
Lesson 9: Setting the Stage for Learning
Lesson 10: Dealing with Errors
Module 2: Positive Behavior Strategies for Your Child with Autism (English)
Module 2 Introduction
Lesson 1: Changing The Way You Think About Behavior
Lesson 2: Learning And Behavior
Lesson 3: The ABC's Of Behavior (Skills Teaching Revisited)
Lesson 4: Antecedents To Behavior Problems
Lesson 5: Preventing The Triggers
Lesson 6: Determining The Function
Lesson 7: Functional Communication
Lesson 8: Return To Skills Teaching
Lesson 9: Common Sense Strategies
Lesson 10: How Do I Know It's Working?
Hope this is the resource you were looking for!
- ADEPT (Autism Distance Education Parent Training)