Archive for the ‘Family Services’ Category

Learn More About January’s Home of the Month

January 19, 2012 1 comment

After we highlighted Farmsteads of New England as January’s “Home of the Month” on our new Housing Portal, we received many requests for more information about this housing initiative. For that reason, we asked its Founder and Executive Director, Deborah DeScenza, to blog about her experiences with her son, Andrew, and about how FNE got its start.

“What is going to happen to Andrew when he grows up?” I recall asking myself this question as I sat at my desk one night when my son was about 8 years old. Andrew had been diagnosed with autism years ago, and all of my focus and energy up to that point had been dedicated to working with his school to make sure he received the supports and services he needed there. But now I had a new concern: his long term future.

When I researched what services were available in our state, I found that there was basically only one model: adult foster care for residential services or competitive employment/volunteering/ “van therapy” during the day. I felt my son needed something different, so I started thinking about Andrew’s interests and needs, as well as his strengths and weaknesses. As Andrew grew older, it grew more and more difficult for me to take care of him alone. He was non-verbal, needed help with personal care, and he had developed insomnia and obsessive-compulsive tendencies that were very difficult to manage day in and day out. Andrew would need a staffed residence with 24-hour supervision and day services that would allow him to do activities that he could understand the meaning of. I also wanted him in a rural setting where he could safely expend his excess energy. It dawned on me that a farm might just be a wonderful place for him to live because it would provide him with the “room to roam” he needed without the worry of traffic on busy streets, and it would allow him to utilize his assets while minimizing the impact of his social limitations. But I also knew that we needed to ensure that he was not isolated and lonely.

Thus, I began to develop the idea of a farmstead that provides the opportunity for several people with autism (or other developmental disabilities) to live and work together in a supportive farming environment – an environment that gives these individuals the support they need to do meaningful work, to live a healthy lifestyle, and to develop genuine and long-lasting friendships. I also wanted a work environment that gives the staff the support they need in order to prevent the burn-out that is so prevalent in their field. I wanted them to have the chance to work as part of a team and to have help readily available if needed. So I developed a model in which the staff works in shifts as mentors to the individuals with autism – they live, work, and play alongside the farmers, modeling appropriate behaviors and interactions instead of simply supervising or coaching.

Today, after a lot of hard work, and some good fortune, our Farmsteads of New England consists of 6 residential buildings. Each one consists of four one-bedroom apartments surrounding a common room. In most cases, there are three individuals with autism or other developmental disabilities and one non-disabled mentor living in the building. We are able to provide essential supports to adults with a wide range of needs.  We have also focused on developing a good working relationship with the local community which benefits everyone involved.

Next, we hope to replicate our model throughoutNew Englandin the years to come. We have already started day services at a second farm inNew Hampshireand hope to add residential services there in the future. In my opinion, it makes sense to replicate a working model with the backing of an existing and successful organization, rather than force other families to start from scratch if they want a similar future for their child.

For more information about Farmsteads of New England, visit them here.

For more information about the new Autism Speaks Housing and Residential Supports Portal and tool kit, please click here.

The Best of Both Worlds

January 5, 2012 51 comments

This is a guest post by Allison Rogers.  Allison is a lawyer in private practice in Washington D.C. and volunteers actively with Autism Speaks in their housing policy initiative.  She has a younger brother, Adam, who has autism.

For as long as I remember I would ask my Mom these questions. Is Adam going to live at home forever? No. Will he live with me when I am older? He will have a house of his own one day. When’s that going to be? I don’t know, sometime after he graduates high school. Who’s he going to live with? Ideally Jeff and Joe, maybe a couple of other boys, and a support staff.

I will be completely honest and admit that I had no role in my brother’s summer of 2010 move into a group home. Throughout the years, my Mom promised us, without exception, that Adam would have a home of his own one day. I think this was her way of protecting all of her children and not just the one who needs the most protection. She took on the responsibility, not only because she was in the best position as a mother to advocate on his behalf, but because she did not want to leave this huge responsibility of mapping my brother’s future to her daughters. As the matriarch of the family she set the tone for familial relationships. Stacey and I, as sisters, must love and support Adam, but Shari, as the Mom, will make the big decisions.

Fast Forward to June 2010. I am locked in the basement of the law library studying for the bar exam, receiving texts from Mom. He’s moved out. Are you ok? I feel weird. Do you need to talk? Ok.

We talked. I did my best to assure her it was a transition, transitions are always hard, and once she gets used to the new living situation both she and Adam would be better off. I tried to comfort her. I remember saying, “it’s like when I went off to college; it’s like when Stacey went off to college. It’s a huge, but completely normal adjustment. And most importantly, he’s FIVE MILES AWAY.” And that’s how, just for a moment, the roles switched and I became the protective one, but not of Adam, of my Mom.

August 2010 I made my first visit to Adam’s home. The descriptions I heard that the house is huge; the house is beautiful; the house is individualized to your brother’s and his housemates’ needs were not inaccurate. The house is huge. The house is beautiful. The house is Adam. Adam lives with four other boys. Two of the boys, Jeff and Joe, Adam grew up with. They each have their own rooms, reflecting their personalities, and their bedroom doors are adorned with the first letter of their names. They have ample living and dining space, a back and front yard, a television and even a Wii.

I love Adam and his new independence. Of course, the house did not cure him. He’s still Adam. He still has his moods and he will still have his nights where he stays up all night shouting to whoever will listen. He still repeats words, sometimes hundreds of times, and he will still rip his shirts and blankets for no apparent reason. Yet he is happy. He is happy with his house. He is happy with his friends. He is happy to come home to my parents’ house and he is happy when we go to the house to visit him. I see pride when he shows me his room, points to the family pictures on his bedroom wall, shows me his Wii bowling skills and sets the dining room table.

I can honestly say Adam moving into a group home has given our family the best of both worlds. He has independence. My parents have their independence. Yet we are five miles and ten minutes away from family time.

Donating in honor of a friend

December 21, 2011 8 comments


This blog post is by Owen, with the help of his mom for the big words.

This past July, I started taking hockey lessons from a new coach at our hockey rink. One of the students he had skating with me was seven year old Cody Smith. Sometimes I did not understand why he would play good on some days and then have a bad day at practice (crying, leaving the ice, not listening to coach). His parents told my mom that Cody was a “special” person. He had something called Aspergers. (To a five year old it was just another big word.)  We became friends and started to do fun things together. To me he was not any different from me or any of my other friends, he had good moods and bad moods too just like we did. He played with the same kind of toys, went to normal school, and even played hockey like I did.

In October, we started planning my 6th birthday party. And even though I was excited that presents were going to be coming, I knew that there was something else better. I have all the toys I want, so I wanted to help Cody and kids that were like him. I told my mom and dad that I wanted to help raise money for Cody. I asked my friends who were invited to bring money to help Autism Speaks to the birthday party instead of presents.

A few weeks ago, I had my birthday party. Everyone had fun bouncing around, eating pizza, having cake and ice cream. Many of my first grade classmates and my hockey team attended. They brought presents for me (even though they did not have to) and also money to donate to Autism Speaks. When mom and dad finished counting all of the money, I had raised seven hundred dollars. My parents tell me they are proud of me for helping out someone else. Cody’s mom and dad told me that I was special for helping out a good cause. I just know that I was helping my friend.


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

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 to learn more!

Updated Searchable Grants Search Now Online

December 14, 2011 2 comments

Today we launched a consolidated grant search engine on 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
Hello everyone! Welcome to our Family Services Office Hours! We are here to help answer your questions, and provide you with some great resources!
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.

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.
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
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:
Comment From Jodie

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

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. 
In addition, the Family Services Dept will begin it’s Technology Grant in January, 2012. Check back on our webiste for updates.
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?

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..

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: and
Hello Guest
– You can call the Autism Response Team – ART at 888-288-4762, staff are available e to answeer you question.
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.

Hi Darlene. We have a very comprehensive Resource Guide that contains lots of resources and State Information. You can visit our Resource Guide at, click on Delaware and search within your state.
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
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.

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
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.

Hi Guest. You can search our online Resource Guide for services in Cedar Park, TX at 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.
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?

Hi David- Family Services offer a great Tool Kit for free to parents of individuals with ASD. You can order the Kit at: The Kit cover all areas related to transition and will give you information on Social Security Benefits. Please order it today!
Comment From misty

is there services in washington that medical covers

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
Comment From Rach

Are there any Autism support groups near Frankton, Indiana

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. 
Comment From misty

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

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.
You can also learn more about autism, its causes, treatments, etc. at
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?

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.
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?

Hi Jodie. We have a list of advocates in our Resource Guide which you can search at 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 at
Comment From Rechelle

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

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
Comment From Sheri

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

Comment From LATOYA


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 We also have a list of family grant and assistance programs in our Resource Library at
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.

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:
Comment From Kimbyr

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

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 We also have a list of family grant and assistance programs in our Resource Library at
Comment From Amy

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

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.
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?

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
Here is a link to our Nutrition and Autism page, which has lots of great information and resources:
You can also search the Diet/Nutrition category in our Resource Library or search our resource for professionals in your area
Comment From Claire Marie

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

Hello I want to let you know about our Resource Guide, you can serach the DE resources in a variety of categories.
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.
You may want to contact Autism Delaware, a great organization we have heard about in Delaware for families of individuals with autism:
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?

Hi Deborah – I want to offer you the link to the Transition Tool Kit, 
the kit is available free online to parents whose children are 14-22 years old. You can order a kit online.
We also have a list of resources for young adults/adults with autism in our Resource Library that includes some college information:
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.
Deborah – I want to add a link to 3 articles on bullying and ASD
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.

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:
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:
Comment From Laura


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
We will see you right back here next Wednesday!
Categories: Family Services Tags: , ,

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