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Archive for the ‘Family Services’ Category

Safety in the Community

December 15, 2011 3 comments

This is a blog post by Dennis Debbaudt, the father of a young man with autism and founder of Autism Risk & Safety Management (link to www.autismriskmanagement.com)

Whether living on the autism spectrum or not, we’re all part of the human condition. As humans, we all need the essentials of everyday life. We all need to work, play and love. We need work that we take pride in. We do our best and reap the rewards of doing so. We need to take a break from work and have some fun. Sports, the arts, taking a walk in the park, playing a game, reading a book. We find activities we like and get a chance to smile and relax while doing so. We need to make friends among family, neighbors, classmates, co-workers and the people we meet along the road of life. And we need to feel safe and secure while pursuing these activities.

Addressing safety and risk can be accomplished by making a plan that meets our unique needs, then making that plan a part of our daily routines.

The ultimate plan will be yours to design with people that you love and trust. The goal? That everyone can work, have fun and friends in a safe and risk free environment!

This month, Autism Speaks has updated the Autism Safety Project and released new information on safety in the home, safety in the community, and sexual abuse and other forms of mistreatment. The Autism Safety Project also includes information for first responders and other professionals who may interact with children and adults with autism. Please consider the information here as a starting point for discussion!  Visit www.autismspeaks.org/safety to learn more!

Updated Searchable Grants Search Now Online

December 14, 2011 2 comments


Today we launched a consolidated grant search engine on autismspeaks.org that contains all of the research and community grants that we have funded since 2006. This comprehensive search gives our community and staff a complete picture of the impact that Autism Speaks has on the community and around the world.

Here are the top 6 features that this updated site includes:

  1. Both Science and Family Services grants, with icons to distinguish them
  2. Attachments! Contributors to the database can now add attachments describing the outcomes of the grants. This will include research papers and/or links to publications available online.
  3. Advanced search that allows for multiple terms and criteria.
  4. Customized search and export for offline and presentation use
  5. Behind the scenes goodness: Including a “data bridge” to keep the grants up to date

You can find all this goodness here.

A Tale of Safe Signals

December 12, 2011 1 comment

By Lisa Murray-Johnson, PhD, The Ohio State University Medical Center and Ohio State University Nisonger Center

“We are grateful he’s alive.” Pat’s voice was strong, but you could still hear the heartache as she described the horrific fire that injured her son John and claimed the life of his roommate and a caregiver. “He was burned over 18 percent of his body and Fred and I knew it would be a long recovery.” As a young adult with autism and other developmental disabilities, John recovered at The Ohio State University Medical Center’s Burn Unit.

I thought I was just having lunch with my colleagues Pat Cloppert and Becky Coffey. I didn’t realize how prevalent burn injuries were among young adults, nor was I aware that Becky had cared for John. Becky Coffey, RN, CNP, is a nurse practitioner in the OSUMC Burn Unit. She said 68 percent of all burn and hot water scalds happen at home. These were the statistics from the National Burn Registry from 2001-2010, a database that records burns from such events as fires, hot water, hot objects and chemicals. The numbers were startling; as many as 450,000 people need medical treatment for burn injuries each year:

  • 44 percent of burns are from flame fires.
  • 33 percent of burns are from hot water scalds.
  • 9 percent are from contact with hot objects.

And these are only the reported injuries. Those who treat their injuries at home without a doctor or hospital visit are not included. It underscores the enormity of the problem.

Pat Cloppert, BSFS, is an advocate and public speaker for family services and autism at The Ohio State University’s NisongerCenterfor Developmental Disabilities. Her life has been to the service of others. But that day, she was a mom. We were three health professionals who were mothers. What if that had been my child?

The Safe Signals project was born. The goal was simple: Create a tool kit with a video, workbook and vinyl clings that would serve as everyday safety reminders. Burn and scald prevention education also has the potential to reduce other household injuries and fires in the home. Diane Moyer, RN, patient education associate director, and fire fighter Jaime Sierra, a public education specialist with Columbus Division of Fire, rounded out our team.

We also needed young adults to help us with this project. It was meant to be a project by young adults, and for young adults. Pat and her colleague Jeff Siegel, MSW, social worker for Aspirations Ohio and also at theNisongerCenter, helped to coordinate young adults on the autism spectrum to join us. Together, we were each other’s teachers and students.

There are so many moments that make the Safe Signals project special: Justin Rooney, our narrator, showing his gift of voiceover work, or Alissa Mangan and Tommi Lee Gillard working to shape the dialogue of the video script so that it felt comfortable. Or the moments when Seamus McCord and Tom Robison worked through the kitchen scene finding humor in overcooked noodles for the macaroni and cheese. And Zoe Castro, our Spanish narrator, graciously helping us navigate cultural sensitivities.

We hope you find the Safe Signals toolkit helpful in looking at your own living space with a fresh perspective. Most safety behaviors take very little time and money. From our homes to yours, we wish you safe living!

  • Plan out safety behaviors for each task at home. For example, use oven gloves and pan lids to protect yourself when cooking.
  • Practice safety behaviors and place reminders in each room to help you.
  • Set the hot water heater or boiler to 120 degrees Fahrenheit (48 degrees Celsius) to avoid burns. Always turn on the cold water first, and then add warm water.
  • Create a fire escape plan. If there is a fire, get outside and then call 911. Do not go back inside. Wait for help to arrive.
  • Install smoke and carbon monoxide detectors where you live. Test them each month and change the batteries every 6 months.

Note: Pat Cloppert, BSFS, contributed to this blog.

Family Services Office Hours – 12.07.11

December 9, 2011 3 comments
2:58
Hello everyone! Welcome to our Family Services Office Hours! We are here to help answer your questions, and provide you with some great resources!
2:59
Comment From rach

I have two boys with Autism no one in my family has autism why is this? Both boys are from two dfferent Dads and their is also Autism not found on either sides either.

3:00
Hi Rach. That is a great question. We don’t have all of the answers about autism and its causes, however what we do know is that most cases of autism appear to be caused by a combination of autism risk genes and environmental factors that influence early brain development.
3:01
You can email our Science team at science@autismspeaks.organd they are happy to answer more science-specific questions. You can read a lot more about autism and what causes it on our website at www.autismspeaks.org/what-autism
3:02
Alycia Halladay, a member of our Science team, had a live chat earlier this year about Increased Risk of Autism in Siblings. You can read the transcript here:http://blog.autismspeaks.org/2011/08/16/increased-risk-live-chat/
3:02
Comment From Jodie

Hi. I am looking for grants to help pay for an Ipad.

3:02
Hello – There are a number of organizations that have implemneted iPad grants to families. You can find them on our website in the Resource guide.
http://www.autismspeaks.org/family-services/resource-library/autism-apps 
In addition, the Family Services Dept will begin it’s Technology Grant in January, 2012. Check back on our webiste for updates.
3:03
Comment From angie

my son is two and he speaks very little. how old does he need to be before he can be tested for autism or something like it?

3:04
Comment From Guest

Will someone PLEASE call me? My name is Terri Limberg. My home # is 417.681.0397 in Lamar, Missouri…We have private insurance but want to know if there is any assistance offered in having our 7 1/2 year old grandson Ezekiel professionally evaluated by a diagostic team for possible asbergers? We live paycheck to paycheck and just cannot pay the deductibe and out of pocket..

3:04
Hi Angie. Sometimes autism can be diagnosed as early as 18 months or before. If you suspect your son may have autism, you should call your pediatrician for an evaluation. You can read more about the signs of autism, and view videos about some of the symptoms at these 2 links: http://www.autismspeaks.org/what-autism/learn-signs and http://www.autismspeaks.org/what-autism/video-glossary
3:05
Hello Guest
– You can call the Autism Response Team – ART at 888-288-4762, staff are available e to answeer you question.
3:05
Comment From Darlene Baboo

I am the grandmother of an autistic grandson and found there isn’t much available in the state of Delaware any information you may have would be very helpful.

3:05
Hi Darlene. We have a very comprehensive Resource Guide that contains lots of resources and State Information. You can visit our Resource Guide at www.autismspeaks.org/resource-guide, click on Delaware and search within your state.
3:06
We also have a great Support Tool Kit for grandparents, which may be helpful to you. You can view and download the kit for free at http://www.autismspeaks.org/family-services/community-connections/celebrating-grandparents
3:06
Comment From Guest

I have a 10 year old nephew that I baby sit. I cannot get him to sit on the potty to go #2 he would rather dirty his pants. He is very scared of the potty. What can I do to help him and get him trained he will pee in there but not the other nor at school.

3:09
Hello Guest – Potty Training a child with ASD can be a challenage and its important to work closely with his teacher or trained professional to set up a plan that can be implemneted across all enviromenets. There are a number of very helpful links to books on Toilet Training
http://www.autismspeaks.org/family-services/resource-library/books
3:10
Comment From Guest

I am a mother of three boys, all of whom are on the spectrum, and I am looking for resources in Cedar Park, TX (North Austin). We moved here four months ago and don’t know where to look.

3:10
Hi Guest. You can search our online Resource Guide for services in Cedar Park, TX at www.autismspeaks.org/resource-guide. Simply click on Texas, click the category you are looking to search and then type in your zip code along with a mile radius. We suggest putting in a large mile radius because if there aren’t any within 5-10 miles or so, you can contact the ones a bit further away who may be able to help you or to point you to resources closer to you. All of these resources have been submitted by the providers themselves or by families in our community who have found them to be helpful.
3:10
Comment From David

My son is almost 18 now. He was diagnosed at an early age with ASD. His doctor mention to us that we need to think about filing for Social Security Disability for him. We are in Florida. Any advice before we start or what to expect?

3:13
Hi David- Family Services offer a great Tool Kit for free to parents of individuals with ASD. You can order the Kit at:
http://www.autismspeaks.org/family-services/tool-kits/transition-tool-kit The Kit cover all areas related to transition and will give you information on Social Security Benefits. Please order it today!
3:13
Comment From misty

is there services in washington that medical covers

3:13
Hi Misty. We don’t list the services in our Resource Guide by fee schedule or by who takes what but you should search the guide and call the providers to check and see what insurance they take. I also suggest you search the Local Autism Organizations category, because those organizations in your area will most likely be better able to point you in the right direction and give you more specific information about local services.www.autismspeaks.org/resource-guide
3:13
Comment From Rach

Are there any Autism support groups near Frankton, Indiana

3:15
Hello Rach – Family Services Resource Guide is a great resource for local autism services
Click on your state,and then click on a category, you will be asked to enter a zip code in the state you picked. After you enter your zip code and hit the enter key, a map of all the listings of that category in the state will appear.
http://www.autismspeaks.org/family-services/resource-guide 
3:15
Comment From misty

hi i have a boy 8yrs who has PDDnos? dont understand this diagnosis?

3:15
Misty and for those of you with recently diagnosed children. We have a 100 Day Kit and an Asperger Syndrome/High-Functioning Autism Tool Kit that we send our free of charge to families of children diagnosed in the last 6 months to help guide them through the months following diagnosis. You can order a FREE copy by calling our Autism Response Team at 888-AUTISM2.http://www.autismspeaks.org/family-services/tool-kits/100-day-kit
3:16
You can also learn more about autism, its causes, treatments, etc. at www.autismspeaks.org/what-autism
3:17
Comment From Patty

Lately my 7 year old daughter with PDD has been flapping her hands more frequently. Is this something I should be worried about?

3:21
Hi Patty- Its important to understand why your daughter has increased this behavior. I would recommend you speak with her school team or other professionals who can help you to analyze the increase in this behavior . Individuals with ASD oftern use behavior as a way of communicating, and for that reason you will want to know her intentions. Be sure to consult with a professional who understands behavior and has expereince wirking with ASD individuals.
3:21
Comment From Jodie

With all of the cuts to special education, it has become difficult to get the services my son needs. How can I go about finding an advocate for help?

3:21
Hi Jodie. We have a list of advocates in our Resource Guide which you can search at www.autismspeaks.org/resource-guideby clicking on your state and then the Advocates page. We also have lots of information on our website about legal rights, including a comprehensive IEP guide about how to effectively get the services you need in school athttp://www.autismspeaks.org/what-autism/your-childs-rights
3:22
Comment From Rechelle

Wondering if there is any way to motivate an Aspie to do his homework/classwork?

3:24
Hi Rachelle – Since each person’s response is going to be different depending on what motivates them, I would recommend you consult with a professional who understand behavior and the ASD diagnosis.
In additon, Family Services offer a Aspergers’s Syndrome/HFA Tool Kit at
http://www.autismspeaks.org/family-services/tool-kits/asperger-syndrome-and-high-functioning-autism-tool-kit
3:24
Comment From Sheri

Is there any kind of treatment assistance available in Texas that is not based on a parents income?

3:24
Comment From LATOYA

I WAS TRYING TO FIND OUT ABOUT GRANTS TO HELP PAY FOR ABA SERVICES. AND ALSO TO FIND PROGRAMS FOR THE SUMMER. I LIVE IN PLAQUEMINE, LA

3:25
Hi Sheri and Latoya. You can search our Resource Guide for Family Grant Opportunities, as well as Local Autism Organizations in your area who may know of treatment assistance resources at www.autismspeaks.org/resource-guide. We also have a list of family grant and assistance programs in our Resource Library at http://www.autismspeaks.org/family-services/resource-library/families-need
3:25
Comment From julie

My son is 11, high functioning PDD-NOS. Diagnosed in April. He has always coped well in school, but when he gets home it is like he releases all the stress of having to conform all day and can get very angry and likes to be alone in his room for as long as we will let him. Getting him to do his homework is sometimes impossible no matter what sort of boundaries, rewards, disciplines we have tried. How do I tell the school that so it can get in his IEP and affect his homework requirements? They tend to think it must be his home environment since he does “fine” at school.

3:30
Hello Julie- You raise a great question. How can I get something wrritten into your child’s IEP? Any parent has a right to call an IEP meeting and present information and request an assessment? Is the avoidant behavior observred in the classroom as well as the home enviroment? There are many questions you need answers to, as well as a plan that will be used in school and home. The Family Servies IEP guide will help you with this process:
http://www.autismspeaks.org/sites/default/files/gp_iep_guide.pdf
3:30
Comment From Kimbyr

I am looking for grants in New Hampshire to help pay for ABA therapy. Any suggestions?

3:31
Hi Kimbyr! You can search our Resource Guide for Family Grant Opportunities, as well as Local Autism Organizations in your area who may know of treatment assistance resources atwww.autismspeaks.org/resource-guide. We also have a list of family grant and assistance programs in our Resource Library athttp://www.autismspeaks.org/family-services/resource-library/families-need
3:32
Comment From Amy

Any tips on moving a 3-year-old with high-functioning autism from our bedroom to sharing one with his brothers?

3:35
Hi Amy– I would recommend you work with your pedatrician and other professional from your son’s Early intervention Team to come up with a plan that can be successfully implemented over time. You are absolutely right to seek help and advise on this significant transition. I am including links to our Sibling Support Guide and Sleep and Autism webpages.
3:37
Comment From Jennifer

What is a good diet to try my 4yr old son on he has Autism and is nonverbal and he loves to eat snacks over eating real food? What would be a good communication device for him?

3:41
HI Jennifer – I recommend you consult your child’s MD on the issue of nutrition. Children with ASD are known picky eaters, it will take a team effort to come up with a plan that can addresss all of the issues. I would ask your pediatrician for a referral to a professional who has expereince with nutrition with children with ASD
3:41
Here is a link to our Nutrition and Autism page, which has lots of great information and resources:http://www.autismspeaks.org/family-services/health-and-wellness/nutrition
3:42
You can also search the Diet/Nutrition category in our Resource Library http://www.autismspeaks.org/family-services/resource-library/diet-nutrition or search our resource guidewww.autismspeaks.org/resource-guide for professionals in your area
3:42
Comment From Claire Marie

Relocating from PA to DE. Any advise on how to make it a smooth transition?

3:44
Hello I want to let you know about our Resource Guide
http://www.autismspeaks.org/family-services/resource-guide, you can serach the DE resources in a variety of categories.
3:44
You may want to search the state information categories and call the state offices for more information about the resources and policies in DE for children with autism.
3:45
You may want to contact Autism Delaware, a great organization we have heard about in Delaware for families of individuals with autism: http://www.delautism.org/
3:47
Comment From Deborah

My son is 17 and a senior at a public high school. I have some questions: 1. Why is it that it is so difficult to find a professional who knows how to diagnose autism? My son was almost 17 before we found someone who diagnosed him properly and is finally helping him! 2. How do we prevent bullying or deal with it once it’s happened? My son has been bullied almost his entire school career; every day I worry I’m going to get a call about someone else who bullied him. The only response we get from administration is that they need a witness and often no one will come forward! 3. My son wants to go to college. What do we look for in a school that will help him to be successful both socially and academically? 4. Are there any grants or scholarships for Asperger’s or Autism students going to college? Where do I find them?

3:49
Hi Deborah – I want to offer you the link to the Transition Tool Kit,
http://www.autismspeaks.org/family-services/tool-kits/transition-tool-kit 
the kit is available free online to parents whose children are 14-22 years old. You can order a kit online.
3:50
We also have a list of resources for young adults/adults with autism in our Resource Library that includes some college information: http://www.autismspeaks.org/family-services/resource-library/adults-autism
3:50
The Transition Tool Kit is an extremely comprehensive kit that contains a great deal of information about individuals with autism on their transition from school into adulthood. We can send one to you free of charge at the above link.
3:51
Deborah – I want to add a link to 3 articles on bullying and ASD
http://www.iancommunity.org/cs/articles/bullying
3:54
Comment From Laura

I need help finding counseling services for my thirteen year old son that has verbal apraxia with PDD. We are located in central Missouri near St. Louis.

3:54
Hi Laura! I suggest you search our vent comprehensive Resource Guide for services in your area. We have many listed in St. Louis and the surrounding towns: www.autismspeaks.org/resource-guide
3:55
You may also want to order our Transition Tool Kit which is very helpful for families of children with autism on the transition to adulthood: http://www.autismspeaks.org/family-services/tool-kits/transition-tool-kit
3:57
Comment From Laura

Thanks!!

3:57
Thank you all for joining us for Family Services Office Hours today! If we were unable to answer your questions, or you have anything else to ask, feel free to contact our Autism Response Team at 888-AUTISM2 or familyservices@autismspeaks.org.
3:57
We will see you right back here next Wednesday!
Categories: Family Services Tags: , ,

Topic of the Week – Autism Resource Guide

December 5, 2011 4 comments

The Resource Guide is a nationwide database with over 16,000 autism resources that provide individuals with autism and their families with local autism services.

Submit a Service

The Resource Guide continually adds and updates services. We invite you to submit a service that you would recommend to the autism community. Do you have a autism service you’d like to add to the Autism Speaks Resource Guide? Click here to complete the submission form!


The Month in Review: Autism Speaks November 2011 Impact

December 1, 2011 Leave a comment

Happy Thanksgiving and Happy Holidays to you and your family! This past month has been a whirlwind of activity here at Autism Speaks and we wanted take the opportunity to give thanks to the many collaborators who work with Autism Speaks in a variety of ways; from content partners to research providers to corporate sponsors and marketplace vendors – you all help us every day accomplish our vision and mission. Thank you from the bottom of our hearts and from the Autism Speaks staff and board.

Meanwhile, November was a busy month that featured global science outreach, an update to the resource guide and much more.

One of the common (and terrific!) questions we get is how does research help your child today. We recently posted a terrific blog about just that topic that we highly recommend you read!

“When it comes to helping our children and all those with autism, scientific evidence of benefit puts us on the road to affordable access to therapy. And that means better outcomes. This is what our families deserve and our mission supports.”

Have a wonderful holiday season with your family!

Science

Autism Speaks in Shanghai

  • To China, and Beyond! The science department’s highlights for November begin with the science leadership’s historic trip to Shanghai, China. Our colleagues there were eager to hear about new research and treatments being developed in North America. We were impressed with their technological prowess. In the coming year, the Beijing Genome Institute will be sequencing the DNA of families participating in our Autism Genome Resource Exchange (AGRE) program, allowing us to create the world’s largest whole genome sequence library for autism research.
  • Neuroscience Conference Update Our VP of Translational Research, Rob Ring, Ph.D., and Assistant VP Head of Medical Research Joe Horrigan, M.D., attended the annual conference of the Society for Neuroscience, which began with a special three-day satellite symposium on Autism Spectrum Disorders—from Mechanisms to Therapies. As part of the this symposium on translational research, Autism Speaks co-sponsored the publication of two watershed documents: SnapShot: Autism and the Synapse richly illustrates how 16 autism risk genes interact within and between cells that convey vital brain messages; SnapShot: Genetics of Autism summarizes knowledge on scores of autism-risk genes—both their normal functions and how their mutations increase the risk of certain autism sub-types and syndromes. Both documents are now available for free download from our science page.
  • Awards We are pleased to share the news that the American Public Health Association has bestowed the Rema Lapouse Award for exemplary work in psychiatric epidemiology to longtime scientific advisory committee member Ezra Susser. Ezra is also one of the powerhouses behind our initiative for Global Autism Public Health (GAPH). Congratulations Ezra!

Want to dig into Autism Speaks science even further? Visit the science section of our website, and read the latest blog posts from the science department.

Family Services

Enzo’s mom talks insurance

  • Updated… Autism Speaks Resource Guide This month, Autism Speaks launched the updated version of the Resource Guide, one of the most popular and valuable tools on our website that makes it easier for families to search for resources in their areas from early intervention services, to employment programs, to social skills groups, and much, much more!
    • The new version contains better URLs, updated resources, a bigger map, and the ability for families to share resources on Facebook and Google+.
    • Do you provide or are you aware of services in your area for individuals with autism? Let us know! The new Submit A Service form allows service providers to add their information to the Resource Guide, and gives families the opportunity to input information about resources they have found helpful in a simple and organized way.
  • Autism Speaks Live! Announced here for the very first time, we’re “re-branding” our live chats as “Autism Speaks Live” and developing even more exciting programming in 2012 for you to get educated, be entertained and to join the conversation. This past month we had several live chats including some new topics.
  • Office Hours: Family Services style Each Wednesday at 3PM EST, the Family Services team is available for Office Hours sessions to answer all questions from the Autism Speaks community. Join the conversation!

Stay up to date with the latest from Family Services in a variety of ways! Subscribe to our monthly “community connections” newsletter, Bookmark the Family Services page on our website or read Family Services related blog posts.

The Autism Response Team continues to answer hundreds of emails and phone calls each month from families and individuals with autism. If you have any questions or need assistance or information, please feel free to call us at 888-AUTISM2 or email us at familyservices@autismspeaks.org.

Advocacy

Autism Law Summit

  • A Better Life Parents saving for their child’s college education can take advantage of tax-free “529” accounts to prepare for the future. Parents raising children with autism or other disabilities could soon take advantage of the same tax-free mechanism if newly introduced bipartisan legislation is enacted by Congress. The Achieving a Better Life Experience (ABLE) Act was introduced in the U.S. Senate and U.S. House of Representatives with the support of Autism Speaks, The Arc, the National Down Syndrome Society and other leading disability advocacy groups. Under current federal law, individuals with autism risk losing all of their benefits if they have more than $2,000 in assets in their name.
  • Washington Watch The U.S. Department of Health and Human Services has begun the process of implementing the sweeping federal health care reform law enacted in 2010, a process that could have profound consequences on how autism treatments are covered through insurance. The HHS is determining what services should be included in the “essential benefits” that health plans will be required to cover. Meanwhile, the Congressional “Super Committee” that was to recommend federal budget cuts collapsed without an agreement, placing in jeopardy significant future funding for autism research and services. Autism Speaks is closely monitoring these developments. You can too at our Federal Initiatives page.

Want to get more involved with Autism Speaks advocacy efforts? Sign up to become an advocate on www.autismvotes.org or text “AVotes” to 30644 to be added to our mobile alert list.

Awareness

  • New PSAs features Tommy Hilfiger and Jamie McMurray In early November, we launched our latest “Odds” PSAs with the Ad Council. Created pro bono by BBDO, the PSAs feature fashion icon Tommy Hilfiger and NASCAR driver Jamie McMurray, who both generously donated their time to help further the cause of autism awareness. Viewers are taken on voyages through Hilfiger and McMurray’s lives that highlight the extraordinary statistical odds they each overcame on the road to success compared to the startling one in 110 odds of having a child diagnosed with autism. The PSAs end by encouraging parents to visit autismspeaks.org/signs to learn the signs of autism and to seek early intervention if a delay is suspected.
  • Light It Up Blue in November! On November 29th San Francisco 49er Running Back Frank Gore and recording artists Pia Toscano & Andy Grammer participated in a holiday tree lighting at San Francisco’s famed 555 California Street. The free event was open to the public and benefited Autism Speaks.
  • Google+ Already a fan on Facebook, and a follower on Twitter? Circle us up on Google+ to complete the trilogy! We’re just getting started on Google+ and love how it even further connects us to you, our community!

Want to stay up to date on our awareness efforts? Visit the blog for the latest info… that page is also “RSS” enabled so you can add it to your newsreader!

Autism Awareness and Strategies for Public School Administrators

November 29, 2011 20 comments

Elizabeth V. Neumann, M.A., BCaBA

I was recently reflecting on my teaching career when selecting a topic for my master’s thesis. I wanted to focus on an area that could really make a difference for students with ASDs like the ones I had worked with. I believe I was most effective when I worked with administrators who understood what an autism diagnosis truly entails and what best practices are for these students. Now that I educate other school professionals through the nonprofit agency, Autism New Jersey, I have met many other teachers who share this view, as well as administrators themselves who recognize their critical role in this area. So I chose to research public school administrators’ current level of understanding of autism spectrum disorders. My graduate work was consistent with Autism New Jersey’s mission. As a training resource for parents and professionals for decades, my colleagues and I recognize that a key to effective school programs is consistent support from administrators, and we sought to learn more about their specific needs.

For my study, more than 300 public school superintendents, principals, and special services directors completed surveys. Their responses offered a wealth of information about their knowledge of autism, scientifically-validated strategies, and their strengths and challenges insupporting their staff and students. The data showed that most administrators have very little, if any, training in meeting the complex and unique educational needs of students with ASDs. This is through no fault of their own as there are no requirements pertaining to specific special needs in their certification programs, despite the fact that they are responsible for increasing numbers of students with autism. As school leaders, they make budgetary, curricular, staffing, and scheduling decisions that have a direct effect on students with ASDs without being equipped with evidence-based information that could guide them.

These data guided our development of workshop and publication content focused on the following areas: learning about autism and students’ educational needs; maximizing limited resources by identifying evidence-based practices; supporting staff of diagnosed students in all placements across campus; and providing an extensive list of resources across these topics. Through the partial support of an Autism Speaks Family Services Community Grant, we offered ten free workshops specifically tailored to this underserved yet crucial group of stakeholders in the autism community. Autism for Public School Administrators: What You Need to Know was sent to all special services directors in New Jersey as well as all workshop registrants.

This top-down approach to improving educational services has been very well-received by the participating administrators and the autism community at large. Participants have been most appreciative of this information, and it has been encouraging to see their desire to maximize their offerings to students with ASDs, their families, and the school professionals responsible for their education. One administrator summarized, “Your workshop gave me a terrific overview of autism – hopes and challenges – as well as a broader scope of the input and expertise necessary to sufficiently contribute to the independence of a student with autism.”

Parents and teachers, please encourage your superintendents, principals, and special services directors to order a free copy of Autism for Public School Administrators: What You Need to Know by calling 800.4.AUTISM or visiting www.autismnj.org. We hope that this initiative will be a valuable step to helping public school programs meet the intense needs of students with ASDs and are pursuing additional funding to continue and expand it on behalf of students with autism.

Please note that while the survey responses came solely from New Jersey, the information found in the workshops and publication is likely to be of great value to administrators throughout the country.

 

For more information about the Family Services Community Grants program, visit http://www.autismspeaks.org/family-services/grants/community-grants

What does an organic Santa Cruz microbrewery have in common with a national big-box chain store like Costco?

November 28, 2011 1 comment

Kate Bemesderfer is the Lead Instructor, at the Coryell Autism Center, Santa Cruz, CA

Santa Cruz Mountain Brewing (SCMB) has earned a solid and well-deserved reputation for being more than just a purveyor of tasty organic microbrews and sustainable brewing practices. Brewery owners Chad Brill and Emily Thomas and their talented staff play a major role in Santa Cruz, California community-building. They have high standards, open hearts, and a creative, collaborative approach to just about everything they do. So it is fitting that, on top of everything else they do, SCMB is proving itself to be a valuable ally to the disability community by partnering with Coryell Autism Center to provide job opportunities for our students with autism.

When we approached Chad & Emily about offering an internship to Hunter, they took him in and treated him like one of their own, giving him real work and real compensation from the beginning.  No one at SCMB had much familiarity with autism or developmental disabilities, and the learning curve has at times been sharp.  Like anyone, Hunter has the occasional bad day at work, which means that his coworkers have seen him at his most difficult.  That’s why it’s been so impressive to see the staff of SCMB continue to accept and encourage Hunter to be his best.  It turns out that he has the same effect on them.  As Nicole Beatie, who handles Sales & Distribution for SCMB, puts it, “He’s not really different from any of us. He just needs a little more guidance than some, and probably less than others.  Everyone here has been patient and understanding with him, and that has made me feel good about the other folks I work with, too.”

After six months on the job, Hunter is a valued part of the SCMB team, and it’s a team that Hunter likes being on.  Every bottle of beer the brewery produces is hand-labeled by Hunter, who has learned not only to handle the labeling by himself, but to keep track of the inventory, and to set up the tap room and patio in time for opening. He works at the same rate as anyone else (sometimes faster).  He troubleshoots when supplies are missing, mislaid, or malfunctioning.  He keeps track of his work, noticing and correcting errors.  And he interacts both socially and professionally with the brewery staff, becoming an active part of his own community.  With Hunter’s help, the brewery has been getting bigger.  As the brewery continues to expand, so, too, do Hunter’s opportunities.  It’s a lot of work to keep up with the growing demand, so when the opportunity to increase distribution came to the brewery, Chad and Emily came to Hunter.

Not only is SCMB gearing up to open a second pub in Felton, but they’ve recently contracted with Costco—another of Hunter’s favorite places—to create 6-pack gift boxes of their most popular brews. Once the beer is in the bottles and the bottles are in the warehouse, the job of filling the Costco order falls primarily to Hunter.  SCMB has moved their post-production and storage from the small garage where Hunter started to a much larger warehouse a little farther down the road, so he rides his bike to work instead of walking.  Now, labeling bottles is just the first step in a process that involves taping together gift boxes, filling them with the bottles, sealing them with a hot glue gun, and organizing the finished product on a pallet, all while maintaining a retail-worthy aesthetic.  Hunter takes pride in getting it done right and making it look good.  It’s hard work, but it pays off—literally.  Hunter receives both a WorkAbility paycheck and trade from the brewery.  His favorite part of his shift comes at the end, when he returns to the pub for a nice frosty pint…of root beer!

For more information about Coryell Autism Center visit: www.CoryellAutismCenter.org

LIVE Chat with George Braddock

November 16, 2011 3 comments

Autism Speaks’ Family Services is thrilled to be offering an hour live chat with George Braddock, the President of Creative Housing Solutions LLC.  Please join us on Monday, November 21 at 2:00 p.m. to learn about the work that Mr. Braddock has done to advance community living for adults on autism spectrum.

To join the chat – click here!

George Braddock is President of Creative Housing Solutions LLC. He pioneered the implementation of person-centered planning principles to homes for people with disabilities. George provides environmental engineering services for persons with intellectual and physical disabilities, families, providers and governmental agencies.

George brings to this work an extensive construction background from the field with experience gained from the completion of over 1,500 person-centered projects. He has contributed to the closure of three major state institutions adding significantly to this effort by creating community-based person-centered physical environments that work and make sense for the people who will live and work there. More than 1,000 individuals previously institutionalized now live in community in homes developed, designed and or/constructed by Mr. Braddock.

In addition to developing welcoming and inclusive multi-family housing opportunities for people with ID/DD, George’s work involves developing inclusive, authentic community opportunities for people with disabilities.  Further, he has recently published by the State of New York OPWDD: Making Homes That Work: A Resource Guide for Families Living with Autism Spectrum Disorder and Co-occurring Behaviors.

“How to Prepare for an Autism Emergency” Transcript

November 16, 2011 4 comments
3:46
Hi Everyone! Dennis will be on in less than 15 minutes!
3:46
Here is some information about Dennis before we get started!
3:46
Dennis Debbaudt is the proud father of Brad, a young man who has autism. In the 1980′s,
Dennis wrote for the Detroit News and worked with network television current affairs
programs in the U.S., Canada and United Kingdom. A professional investigator and journalist
since 1977, Dennis turned his attention to autism spectrum conditions in 1987 after his son
was diagnosed with autism. His first report Avoiding Unfortunate Situations was published in
1994. He’s since authored over 30 articles, books and chapters including Autism, Advocates
and Law Enforcement Professionals: Recognizing and Reducing Risk Situations for People with
Autism Spectrum Disorders for Jessica Kingsley Publishers, London UK (2002), Contact with
Individuals with Autism: Effective Resolutions for the FBI Law Enforcement Bulletin
(Debbaudt & Rothman, 2001), Patients with Autism and Other High Risks for the Journal of
Healthcare Protection Management (2009) and Autism in the Criminal Justice System (Taylor,
Mesibov & Debbaudt, 2009).
3:54
Hi, Dennis here! Over the last 20 years, as the rate of autism has increased, so have contacts with law enforcement. Autism emergencies refer to an either unexpected or sudden contact with law enforcement and first responders. Are you prepared for an autism emergency? I’m here to help.
3:58
Comment From LE SAR

I am curious from a law enforcement perspective how much a search for a missing child costs? Does the use of technology substantially decrease these costs?

3:58
There is really no telling how much a search for a missing person costs. NBC News reported statistics going back 10 years that in a 2 year period in a Southeastern state that search and rescue costs during that period were about $200,000. The use of technology does in fact reduce the costs of these searches. When the Project Lifesaver program was instituted in many parts of that state, their costs went down to about $40-50,000 a year.
4:00
I have a 3 letter acronym I use, Preparation, Alert and Response.
4:01
Preparation can mean checking your home or where you are, to see what type of low and high technology you might think about employing. Low technology can be anything like a bell on the window, high technology can be anything that creates an invisible perimeter that if someone crosses can create a serious loud alert. Other parts of preparation would mean getting to know your nearby neighbors so you can have extra eyes and ears if necessary. As well as 911 registry programs.
4:02
Alert would be when the technology is in use: bell goes off, door opens, alarm sounds, neighbor calls and tells you your child is in the lawn. Now you’ve been alerted to it. Then comes the response.
4:02
Being alert, knowing that the incident happened will be key. The sooner you know, the better the response will be.
4:03
The response can be you finding your child, I suggest calling 911 since you need all the help you can get. Technology such as Project Lifesaver, LoJACK, where you have your child registered with the program, can introduce search and rescue immediately and hone in on the tracking device.
4:03
Comment From Lisa

Hello! I have a daughter, 14, who has wandered off more than once. So far, with help from family members, we have been able to locate her and bring her home within minutes without involving the authorities. We live in a very small community. What safety measures can you suggest?

4:05
Hi Lisa. I would suggest you contact a burglar alarm company, professional locksmith or a home improvement company to get a quote about what type of technology can help you get alerted to the wandering. Even though your neighbors may be further away, you still need to be sure you are able to reach out to them immediately. You will still need to have some contact with law enforcement, because there may come a day when you do need to contact safety professionals. Do you want to be proactive or wait until it is needed? It is always going to be a family’s choice.
4:08
Comment From Guest

is law enforcement aware of the gps for children with autism in every state, city, and will an amber alert be issued for autistic children seeing it is differnt circumstances if needed?

4:08
Project Lifesaver, Lojack Safety Net and Care Track use radio frequencies, not GPS. The transmitters are on the children or the adults, they are registered so that once you are alerted to the need to find them then law enforcement does the tracking. Law enforcement officers prefer these because they are very accurate.
4:08
However, now GPS is entering the market. Anyone can purchase a GPS transmitter, but it does put a lot of pressure on families. When we get into that arena, over the past 4-5 years there are a good number of companies that are now providing GPS tracking devices and programs to track people. There are many, many out there now. As you would and should with everything in your life, kick the tires, ask the questions, make sure that you are aware of the backgrounds of these companies, their track records. A fancy website doesn’t always make a terrific product.
4:10
Comment From Guest

is there any new information about the amber alert for autistic children?

4:10
Amber alerts refer to child abductions. Where our population may be helped is in Silver alert programs, where you can still get word out but not necessarily a child abduction. Silver alert programs are used to say there is a child or adult missing or at risk. These programs are also used for older people with dementia or Alzheimer’s.
4:10
Comment From Karol

is a good idea to have one’s child registered with the nearest police department in case of any emergency. example: Finger printed and or small background information on his/her disability?)

4:11
Hi Karol. Registering your child with the police department is voluntary, but I would encourage that. There are some good programs out there that have been created by law enforcement.
4:11
Pensacola, FL police department developed the Taking Home program. Other communities are now modeling it in places such as San Diego.
4:12
In Ottowa, Canada, they have started an autism registry. They are getting feedback from police that this is working, including a report of a young man on a bus having a meltdown. Police were called, and he was on the registry. First responders were able to come in and calm him down about his favorite juice drink, video, etc. They couldn’t have known that without the program.
4:12
Registries are a great idea, but again, they are voluntary.
4:13
Comment From kelly

Do kids tend to outgrow the wandering/running behavior?

4:14
Hi Kelly. Some children do, some don’t. My son is 28, when he was a little boy you would have to have a hand on him or he would run away. Near traffic he would go into to street, near water he would jump in. By the time he was 7 or 8 years old, he had demonstrated to us that he was then able to start judging risk. It can happen, but each person with autism is different. For most children it has to be taught.
4:15
Why children wander chronically can be a mystery to parents and law enforcement. Is it natural curiosity? What is driving this dangerous behavior?
4:15
One suggestion I’ve heard was to video tape where the child was going once you find them. Video tape the route they took and where they were found. Allow the child to watch the tape, and you watch the child that watches the type. They may get really excited about something they see in the tape, which can help you figure out what they are wondering to.
4:16
Once we know what is causing it, we can put into place educational techniques in order to prevent it from reoccuring. You could address it at school or in the home.
4:16
Comment From Gail

Are there any programs in place to help educate police about autistic children and persons? When my then 3 year old autistic daughter was missing, they were the scariest moments of my life. The police were very good and checked my home first (something I hadn’t thought of in my despair) and she was found hiding in the basement. At the time I desperately wished there was an identification system I could use. Now I see there are good programs that you have mentioned. It seems to me that safety needs to be addressed across the board. Beginning with the pediatricians and possibly with the special programs children attend, including and especially Early Intervention.

4:17
Hi Gail. That is essentially what my group does. We travel everywhere into law enforcement and first responder training facilities to conduct direct training with police, 911 communicators, firemen, etc. Since I was first invited into a training room in 1995, through the efforts of the people I work with, we have caused the training of well over 100,000 police and other first responders. This sounds nice, but we still have lots more to go, just in North America.
4:19
There is usually a one time training, but we are now offering an online program, we have training videos, and we are training trainers who can pass it on in other parts of the country. 4 or 5 states are requiring this training in police academies. In the US, we have so many varied and different law enforcement agencies, large and small, local and state, federal, etc. It becomes more of a daunting task but we are making significant inroads in getting the word out.
4:20
Comment From shelda

great information thank you!

4:20
We get very positive feedback from it. The key here is that law enforcement can’t use this training if they don’t know who has autism. It is a 2 way street when the families are participating in these registry programs and reaching out to law enforcement letting them know there is an individual here, a child or adult with autism. We want to make it as easy as possible for first responders to know that this specific contact is autism-related. Building community partnerships between public safety officers and the autism community is key so that in the future these programs become more sustainable.
4:21
Comment From Kim Helmke Mitchell

Dennis, can you provide the links to the programs you referred to above? Specifically, program in Pensacola, FL, and Ottowa, CN, Thanks, Kim

4:21
HI Kim- I will provide links at the end of the session. Thanks
4:21
Comment From Suzie F.

Hi Dennis. You brought up technology. Can you speak about RF vs. GPS. I’m confused on which one to use (battery life etc)

4:22
Comment From Michael

I really appreciate the training law enforcement get on people with autism.A skill much in need.TY

4:22
Hi Suzie. RF is radio frequency, it is what you hear when you turn on a radio such as your car radio. The closer you are to the radio stations antenna, the better the signal comes in. It is line of sight basically. When RF is used, it is a very strong signal, but you have to be within a mile or two. Used in helicopters and ground vehicles and with enough alert time, it is a great technology.
4:23
GPS can be useful but it has some problems with certain terrain in the city or elsewhere that may cause interference. It also may not work in some type of power outage or storm. GPS has to go up to a satellite then come back down to a computer that would track it. It wouldn’t work without this computer. We want only the best for people with autism.
4:23
RF units currently have a battery life of about 6 weeks, but they change it every 4 weeks, and it is always on. My understanding of GPS is that it must be charged up perhaps as frequently as daily.
4:24
Comment From Karol

Are there any programs in the New York city area and have you done any police or facility training in new york and can you provide links to programs in NY.

4:25
Hi Karol. Our group worked directly with the NYPD. Back in 2008 we produced a short 8 minute film for them, an instructor’s guide and I traveled to NYPD’s academy and trained their field training officers, about 360 of them, all being responsible for field training of another 100 officers. 3 years later, they are in production of their own autism related training video for their internal use.
4:26
I would suggest you contact the NY C Police Dept and ask for more information on the topic
4:26
Comment From Megan

Are search and rescue volunteers/staff given training on how to approach an autistic child once they’ve been found? For my son, (2 1/2) I can imagine it could be pretty traumatic to be approached by a complete stranger, who doesn’t understand ASD..

4:27
Comment From Kim Helmke Mitchell

Your comment about relationship w/ police/first responders made good point: that it is a 2 way street. Perhaps some of our autism advocacy groups, local support groups can invited local police to meeting or event or camp to get to recognize certain behaviors, reactions as autistic. I have found many of the police involved my son’s (Shea) already have a working knowledge of autism; there may be a family member, their spouse or sister may teach autistic children. I have found the police, first resp. in Gwinnett County ,GA to be more than helpful when we’ve had problems and needed add’l help

4:27
Hi Megan. I have presented at search and rescue trainings, my work is cited in some of their materials. I cannot say that all of them have received training, I wish I could! I hope one day soon it will be implemented everywhere. What I can report is that 16 years ago, nobody was trained in it. We are making progress. The more help we get from families who can put us in touch with the agencies in their areas, the better off we all can be!
4:28
Search and rescue issues are currently covered in our training videos as well.
4:29
I have trained the Team Adam trainers at the National Center for Missing and Exploited Children. Hopefully word is spreading.
4:29
Comment From Michael

Is there a way parents can see some of these videos that are taught,so we understand better?

4:30
Hi Michael. This depends on where you live. Some local autism organizations may have access to the full videos. There are clips on our website where people can get a sense of what is inside those videos.
4:31
Comment From charlene

I’m in So East FL & it is overloaded with people & commercialism. My 9 yr old Aspie son – is high functioning and too friendly. He often takes off and willingly goes with others in a flash he barely knows. Lucky for us nothing has been harmful and I don’t want to over alert him.. but he flirts with disaster. Do you have any helpful videos to help him understand safety issues?

4:33
There are scenes in our Autism Fire Rescue and Emergency Medical Services that he may learn something from. You may want to watch it first before you show him. My son is high-functioning too. How you teach each child safety and risk is going to be different from the less independent child or adult.
4:33
I have also written 2 book chapters: one is in Asperger Syndrome and Adolescence on the issue of safety. The other is a book called Coming Out Asperger’s which is about disclosure to authorities. Both may be useful in reading along with your son. This information can also be a model for a safety curriculum. Some of this information is already up on our website, and on the Autism Speaks Autism Safety Project website.
4:33
Comment From shelda

yes i strongly agree all law enforcement should get training in autism and there behaviors and there thinking would be wonderful!

4:33
Comment From shelda

can you please explaine what the taking home program is?

4:34
Take Me Home was developed through the Pensacola Police Department in Florida. It uses a database that can include information from families, a current digital photograph. It can also be accessed through the on board computer in a patrol vehicle.
4:35
The New York Times reported in the last couple years that over 80% of US police patrol vehicles now have an on board computer. It can be very useful if that person were out in the community, the alert hasn’t gone off but there seems to be something different. They can go into the registry right in the vehicle and type in the physical description. It would then show only people who matched that description. You would then have photographs where you could see people that were part of this autism registry program.
4:36
Other police departments have put their own unique twists on it. In Ottawa, law enforcement officers are trained to recognize people within the registry system. The detail could be on your car, on your home, etc. that would identify you as part of the program so they could access person-specific information. The Take Me Home program is now spawning other similar successful programs.
4:37
Kim I would absolutely recommend bringing the kids to a police office, firehouse, hospital etc, where there is no threat so they can get a feel of what this is going to be like if they need to do any of it during the emergency. That is an excellent idea.
4:37
It also allows the first response police and the care providers to take to each other in a relaxed environment so they can address each other’s needs.
4:38
It is so important for first responders to be able to interact with children and adults with autism, and the reverse is true as well. We need to know what the police’s needs are as well so both parties are better prepared.
4:40
We have an Autism Emergency Contact form is on our website. It is just a template. All you need is something legible that you can pass on to people you can trust with your information. Keep them in your vehicles, at the neighbors, on your refrigerator, next to your phone, in your chid’s backpack, etc. Making it easy to find is key!
4:41
Here is an example form from the Autism Speaks Autism Safety Project website:http://www.autismsafetyproject.org/atf/cf/%7Bd7db5d5c-3f40-4d04-af93-6f2b2ee549db%7D/FS_EMERGENCYFORMS.PDF
4:41
Comment From shelda

what should be state on the emergency contact form with out this information being in the wrong hands?

4:42
Yes we do talk about the physical and behavioral characteristics at our training sessions. But not everyone is going to have these same characteristics. We show them videos so they can understand what signs of autism may be, but they also must know that not everyone with autism is going to display these traits, so you can’t rely on it as the only source. While one individual with autism may be rocking back and forth, or engaging in a similar behavior, the next one may not.
4:44
I suggest you use other signs like the Autism Speaks bumper sticker, pins, ribbons, anything else, to indicate to people in emergencies that there are special circumstances if you are unable to do/say so. Awareness tools can be hugely helpful. These “icons of autism” do alert people to the fact that somebody has autism, or suggest it at the very least.
4:45
Comment From Marcy

Are medical alert bracelets a good idea for children with Autism?

4:45
Medical alert bracelets are a great idea. I’d also like to make it clear that when it comes to safety and risk in autism, it is not just children, it is adults too.
4:46
Non-permanent tattoos with names and addresses, imprinting information into clothes or undergarments, shoe tags, tags through belt loops, medical alert jewelry, etc. are all products that may be helpful.
4:47
Comment From shelda

can you make your own emergency contact form? do you list that the child or adult is autistic?

4:48
Hi Shelda. Yes, of course you can make your own emergency contact form. The ones you find online are just templates, models, guides. You can provide as much or as little information as you choose.
4:48
The family’s take control here, it is up to all of you what you want to share, and how you want to share it.
4:49
Comment From Hello

Yes, Medic Alert has memberships for both – Kid Smart Membership (17 year and under) and Advantage Membership (18 years and older).

4:49
Managing safety should be part of the daily routine, like wearing seatbelts.
4:49
Comment From Guest

Is it possible to have a national training program and registry program for law enfocement? We are military and moving around brings so many challenges it would be nice if that part of the transition was easier since all of the medical issues consume most of my time.

4:50
In some countries, safety systems are nationalized. Here, if you live in the US probably within a 50 mile radius you would have 50-100 law enforcement agencies, another 50-100 911 call centers. It would be pretty hard to manage that, but you never know!
4:53
In terms of the military, I had a meeting last month with 2 representatives from the Department of Defense up in DC. The plan is to have a live session such as this on the internet that would go out to all military families around the world so we could discuss these programs. Military law enforcement around the country is in attendance as well at our programs.
4:53
They are showing an interest in it, which is great.
4:55
Comment From Guest

as a parent i am very concerned about the safety of my autistic child seeing he is so friendly i feel its like a big flag to abductors and pedifiles if i list he is autistic do u recomend any saftey measures on this issue?

4:56
I only know of one case where a child with autism was abducted, and it was by someone that he knew. Kenneth Lanning Jr. is a retired FBI behavioral analyst, some call them profilers. The FBI allowed him to spend his entire career focusing on child abduction and abuse. He has written about these issues for over 30 years. He has a great deal of information on the tools and flags abductors use in identifying victims. I would strongly recommend his work.
4:58
I hope all of this information today has been helpful. I thank everyone for coming out and chatting! We’ve accomplished somethings in the world of autism and safety, but there is still lots more to do.
4:59
I can be reached at autismriskmanagement.com ordebbaudtlegacy.com. Anyone can also feel free to email me from the websites.
4:59
I want everyone to stay safe, enjoy the holiday season, take those few extra minutes to sit down on a regular basis and discuss these autism risk and safety related issues.
5:01
Thank you for joining! I’m available for questions any time on my website. Enjoy the rest of your day!
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