This is a guest post by Shelley Hendrix, the Director of State Based Advocacy at Autism Speaks.
It was four summers ago that Autism Speaks recruited me to help build a network of autism advocates across the United States, an assignment that recalled my earlier days growing up in the South where summertime activities always included gardening. My parents planted their garden in the spring while my grandmother had a large garden year round at her home in Alabama.
Productive gardening takes diligence – Preparing the ground by tilling and fertilizing the soil. Plowing rows. Placing stakes and strings to support tomatoes and string beans. Planting the seeds or seedlings. And putting up scarecrows. The garden must be watered daily, soil nutrition levels maintained and yes, weeds must be pulled.
As kids, my brothers and I would grow so impatient after planting the seeds. Why did it take so long to notice any change? We would run out every morning to see if anything had popped through the soil or if a flower had formed. Did we see any sign of a fruit or vegetable on the plant? No,just dirt.
But magic was happening below the soil’s surface.
Our mother and grandmother would hand us a bag and instruct us to start pulling the weeds before they got out of hand. Sometimes it was difficult to tell the difference between a weed and a seedling. Sometimes we made mistakes. We rolled up our sleeves for this boring, hot chore, but learned that in order to have a vibrant garden, patience was a prerequisite.
Wait. Wait. Wait. Weed. Weed. Weed.
Somewhere around mid-summer the plants would take off! Delicious vegetables would start coming in – different plants at different times – but just as our mom and grandmother advised us year after year, our patience and care paid off. Our garden was practically bursting!
As the Director of Grassroots Development for Autism Speaks, I have worked with colleagues and volunteers to carefully prepare, till and fertilize the soil for autism advocacy, to plant seeds of change in communities nationwide, to nourish budding plants of reform and from time to time, roll up my sleeves and pull out weeds. All the while, teaching each new gardener, one at a time, how to get to work on tedious, boring tasks while keeping focused on the dream of a beautiful harvest.
This summer, our effort blossomed – we are now 100,000 gardeners strong. 100,000 advocates affiliated with the autism community planted in every state, in communities large and small. These gardeners are dedicated – determined to make a difference for all people with autism, children and adults alike, on a myriad of issues from health insurance coverage, to securing federal research funding, to educational reform and services.
Over the last three years, our community has harvested a total of 25 states that have enacted autism insurance reform and the gardeners there continue to work hard to maintain their patch through implementation. We have planted seeds and are nurturing seedlings in the remaining states to end autism insurance discrimination. We have secured an additional $125M in research funding through the American Recovery and Restoration Act. And we inserted four very important words – “including behavioral health treatment” – into the Patient Protection and Affordability Care Act to cover applied behavior analysis therapy in the essential benefits package for those eligible for health insurance coverage under this law. We are hard at work to maintain the plants that fund autism research and treatment networks by fighting for the Combating Autism Reauthorization Act.
Sometimes, the plants of our garden are on different rows. These different plants produce different fruit and each plant requires different soil conditions and care. But the fruit of each plant is essential to a balanced diet of change within the autism community. We cannot let any of them wither on the vine.
In the end, I learned life lessons from my mother and grandmother’s teachings. I may have one big black thumb when it comes to raising a real garden of my own, but I love to plant, grow and nurture people and will help you become a strong, healthy advocate for change.
If you want to learn how to roll up your sleeves and make a difference in a community garden, please join our Autism Votes program at www.autismvotes.org. We provide you with easy steps to participate so you can obtain health insurance coverage, federal funding for autism research, secure tax deferred savings plans for your child’s adult needs, services for people with autism and education system improvements. If you are interested in becoming a gardener or district leader in your area, please email us at firstname.lastname@example.org .
This is a blog post by Mary Beth Schleif of Friendship Ventures, a Minnesota organization that offers unique opportunities for people with disabilities to enjoy resident camp, respite care and supervised travel. At Friendship Ventures, everybody fits in! Friendship Ventures was a recipient of an Autism Speaks Baker Summer Camp Grant.
A parent’s perspective
With our three camps in Minnesota, Friendship Ventures provides vital social and recreational enrichment for children, teens and adults with a variety of developmental disabilities, including autism. We hear frequently from parents that camp is a lifesaver – not only for their children but for themselves. Parents Jane and Steve, whose sons both have autism, share their story.
We have twin sons, Michael and Erik, who are both autistic and disabled. Michael is quite social and was able to attend some of the local camps nearer to us. Erik, on the other hand, is more of a challenge. He would feel bad when his brother could go to camp and he was not able. We found Camp Friendship a few years ago and it has been our “godsend.” Erik and Michael both LOVE camp and look forward to it every year.
This would not have been possible without the scholarship we received. As you could well imagine, the camp fee for two children is out of the range of something we could manage on a yearly basis. It is only with the gifts from generous donors that we are able to send two very happy children to a wonderful and giving camp on a yearly basis. It truly is the highlight of their summer.
We are very grateful for the respite camp offers to us as the caregivers. These weeks at camp have been the most restful for us, as the staff have the experience and the patience to handle everything Erik has been able to dish out!! In fact, this is the first camp that really understood our children’s disabilities and we did not feel alone. We used to be called by those who were caring for Erik on nearly a daily basis with problems (which is unnerving when we try to relax).
The first year at Camp Friendship, we held our breath – when would the call come?? Around the middle of the week, lo and behold, we did get a call – “was there a reason we did not want Erik to go to Dairy Queen?” We were dumbfounded; no one ever wanted to bring him anywhere!! We were in 7th heaven and have been coming back since. The boys talk about camp all year and ask when they are going again.
Our children love this and with scholarship help and continued support, we will look forward to the opportunity for many years to come.
We at Friendship Ventures work to provide camp activities that are fun and beneficial for every camper. It’s great to hear from the families we serve that we are succeeding!
Click here to read this month’s Community Connections – Stepping Up to Summertime Fun! To learn more about Friendship Ventures, visit www.friendshipventures.org. To learn more about the Autism Speaks Baker Summer Camp Grant Program, click here.
This is a blog post by Rachel, a military wife and mother of two children. Her daughter RM was born with a 4q Deletion and has an autism diagnosis. Rachel was part of the ‘Light the White House Blue for Autism‘ campaign and has a blog,’Welcome to StimCity.’
It was the longest wait of my life in that Recovery Room, but I was finally brought to a private maternity room on the floor. Within minutes, a nurse was wheeling in my beautiful baby girl. As she passed RM to me –I can still feel the sensation – my heart swelled with a new kind of love, one that would carry me through a journey I had never guessed was coming.
I can recall purposefully not looking at the pinkie finger. Instead I studied every other inch of her. I can also admit that her overlapping toes were undeniable. However, it was far easier at the time to believe that any kid who had spent the last several months literally sitting on her toes would be a bit scrunched up in that area.
But then there was the matter of her very tiny, nearly non-existent chin and very tiny mouth. She couldn’t latch on to my breast to feed and after failing to breastfeed my son, I really wanted to find success this time around.
It was a no-go. She just couldn’t do it.
The nurse came back with a bottle and after several attempts at that - long periods of sucking that barely drew a drop from the nipple - panic was beginning to set in. She would cry of hunger, but the cry was a sound I had never heard before. Muffled. Like there were cotton balls in her throat.
Where the hell was my husband? Why was I sitting here all alone with this baby and getting nowhere, having no answers and feeling that I was sinking into a dark abyss. Call it denial, postpartum exhaustion – whatever – but I was not bonding with this child. Instead I was terrified.
I don’t remember much of that first afternoon into evening. It would be 24 more hours or so before my SGM made it to the hospital. In the meantime I was alone. I had sent RM to the nursery so that I could rest. But in reality, I think I had done so because I was unable at the time to process that my baby’s entrance into this world was a far cry from joyous.
I only needed to make it through that night. Then I would see my soldier again. And he would make everything alright.
The next day, when my SGM walked into my room, my world was whole again. He would prove to be the strongest, most faithful soul I had ever known – from that first moment he held her, he knew in his heart RM is perfect just the way she is.
A soldier who commits his life to serving our country innately possesses certain qualities that few of us civilians can fully understand. SGM has never faltered in his belief that even when the mission is critically compromised, remaining steadfast and courageous can still get the job done. Failing to follow through is not an option. He has applied those same principles to RM, and in doing so has taught me to keep fighting.
We cannot change the world without first being the change we seek.
“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to email@example.com. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.
Celebrities, concert and cards on hand for autism fundraiser (Charlotte, N.C.)
Veteran R&B group Boyz II Men and a slew of sports celebrities come together Saturday for “Lake, Land and Lyrics,” a fundraiser for Autism Services of Mecklenburg County. Read more.
Ride to raise money for autism center (Bakersfield, Calif.)
It’s time to gear up, get on that bike and be sure you are ready to party for the first-ever Ride for Autism at Yokuts Park on Saturday. The event is aimed at providing help for families and those living with the developmental condition but it also promises fun in the sun for motorcyclists looking to show off their skills and families looking for an afternoon of games and entertainment. Read more.
3-year-old from Midland Park helps put a face on autism (Midland Park, N.J.)
Kim Cristo did not know much about autism two years ago, so no one is more surprised than she that her daughter’s photo is now helping to raise awareness about the disorder through an Internet campaign. Read more.
Honorary degree for Phoebe’s work to help those affected by autism (UK)
Phoebe Caldwell, 78, has pioneered new techniques to improve the outlook for people with severe autism and has used her talents as a poet, writer, artist and builder to create ways of reaching people who are frequently excluded from community. Read more.
Autism Sufferers Defy The Odds To Climb Cairn Table (UK)
For the 16-year-olds have defied the odds by climbing 2000 feet to the top of Cairn Table near Muirkirk. No mean feat when you consider that Mark and Sam both suffer from autism. Their condition means that the boys have difficulty communicating with people and it affects how they make sense of the world around them. Read more.
By Beth Broderick
Janet Grillo and I are both believers in the sisterhood. There are actually a great number of women in Hollywood who have each other’s backs, but you would be hard pressed to see evidence of this in the media. We are bombarded with images of women behaving badly toward one another … the “Housewives” hurling daggers … “Mean Girls” going for the jugular … Chelsea Handler attacking … everyone. Some of us … in fact I would venture to say that most of us are hard working professionals who know how tough it is out there, especially for women of a certain age. When one of us goes out on a limb with a project to which she is dedicated, we pony up if we can, we talk it up as we should … and by God we show up when we are asked. That is the principle anyway. We also have families, jobs, or lack thereof and a host of other struggles that can make it hard for even a true believer to live up to this standard.
When Janet first approached me about playing Jeanne in “Fly Away” I knew I could not think about it for very long. Taking the lead role in a low low budget film is huge commitment of one’s time energy and resources. There is a ton of give and very little take in the true Indie world. This is not the glossy world of a movie like “The Kids are All right” with major movie stars and a small but comfortable budget. Think separate trailers, decent wardrobe allowance, assistants to run errands and fetch the stars to set asking “Do you need anything”? Can I bring you anything…anything at all? No this is the gritty Indie world of “Can we use your clothes”?” Can you change in a tent”? Do you mind going pee in a Porta-Potty? I took a deep breath and said ‘yes of course I will do it”, because the story needed to be told, because I trusted Janet to tell it, because it is what a sister says. I got myself to the set.
Janet and her ‘dream team” of Pavlina and Sandra and the other bright talented women who took up the lead positions behind the camera and my beautiful movie daughter Ashley and I in front constituted a real sisterhood. We were all moved by the story of a single mom struggling to raise a daughter who is on the Autism spectrum. There were no divas, no raised voices the only drama involved ended up on the screen. We gave every inch of ourselves in trying to be true to it. If you have seen it I hope you can sense our bond. If you have not seen it I hope you will, because this one is straight from our hearts.
There was another woman behind the scenes with us who is a part of the larger sisterhood and also my blood. Laura Broderick was our Autism consultant and she was a great asset to the film. She is also my greatest supporter, my biggest defender and my best friend.
Laura is the executive director of two programs offering supported living services to persons with Autism Spectrum Disorder. She has worked with this population for nearly twenty five years. She has over a hundred employees and the clients she serves have some of the most challenging behaviors imaginable. Nearly eighty percent of the clients receiving support services from “Diverse Journeys” and “Get a Life” have been liberated from institutions. Many were locked away for most of their lives. Laura and her partners are undaunted by even the most extreme cases. When the state approached her about Larry ((not his real name) a man in his mid –thirties – long hospitalized – who had poked his own eyes out in a fit of rage, Laura did not bat hers. “No problem,” she replied. “We will get him a baseball hat and get on with his life”.
Laura and I share a bond that goes beyond sisterhood. Though she is six years my junior ours more closely resembles the relationship that many twins share. We finish each other’s sentences, read each other’s thoughts and are keenly aware of each other’s mood. What is remarkable about this is that we are not at all alike. While we share many physical attributes our appearance has been shaped by the divergent paths that our lives have taken. I have the toned and honed physique of a professional actress. Years of facials and manicures and Pilates have sculpted me into the display version of our genetic code. Laura is tall and strong … the practical version … the girl you call when you need to move a refrigerator or plant a tree. She has been carefree in the sun as her skin bears witness and her wolf-blue eyes are lined with care. This does not dim her beauty, but defines it.
Laura began this work right out of college. Her very first job was the overnight shift in a group home run by the Jay Nolan Center. This was a long time ago when we knew very little about Autism and often grouped people on the spectrum with roommates who had schizophrenia and other mental disorders. This led to a very chaotic environment with most of the emphasis on containment. We shared an apartment then and I was not at all happy to see her come through the door via the emergency room sporting a large human bite mark on her forearm. She had furniture hurled at her, took punches to every part of her body and at one point a young client standing atop a high counter grabbed her by the hair and jumped to the floor bashing her skull against the tiles. . Her hands and arms still bear the scars of scratches and bites that she sustained during this period. I was not sold on the whole idea. Laura was unfazed. She never saw the behaviors of her clients; she always saw and loved the person inside. She pursued her career with a vengeance seeking better ways to communicate with and build a life for people on the Spectrum.
While Laura was honing her expertise in this field, I was honing mine in the world of film and television. We both worked hard, logging long hours and enduring endless frustrations. I battled with the Hollywood hierarchy and she confronted the status quo of an entrenched bureaucracy. She helped me learn countless lines and visited me on set after set, easing the loneliness of life on location. I listened with intent to her concerns about Melissa’s medication or Jimmy’s penchant for running away or whether state funding would dry up. Twenty five years have gone by and we have both come a long way from 800 Park Street and our childhood home. We have lived separate lives but have never really been apart. I have fed her cats, she has walked my dogs. We have shared the heart ache of loves gone wrong, the passion of our politics and the stresses of our oft fractured family. Oh and innumerable bottles of good wine. We call ourselves the pigeon sisters, a nod to the fact that we prefer each other’s company sometimes to the point of fault. We would be worried about, but we are too busy making plans for our next Scrabble tournament.
Our lives have intersected at nearly every turn and that is why it was so gratifying for us to work together on “Fly Away”. It was the first and most likely only time our professional paths have crossed. Laura helped us to make the film ever more authentic and we in turn produced a portrait of what so many families with children on the Spectrum endure. This is the cause of Laura’s life and in that way the story of it too.
The movie was very well reviewed. We received the kind of notices that are a film makers dream. I was deeply grateful for the appreciation from audiences and critics that our little movie managed to reach. It is lovely to have our hard work rewarded, but in my sister’s world there is no applause, no camera to record the long days and nights her dedication requires.
Fly Away is a very personal story for Janet, but also for me. It is an opportunity for me to offer a window into a world that Laura lives in unobserved. A world I was reluctant to enter. A world I would not have chosen for her and yet this world that has offered me a life time of lessons. I now understand the joy of celebrating the small moments of endearment and achievement in her client’s lives. I have learned through Laura’s eyes to see difficult behaviors as simply pieces of the puzzle, simple facts of a life like having red hair or being good at bowling. I look forward to reports about these lives as I do those of my own friends, because her clients are a part of my world now too. When two of her mostly non-verbal clients ask to be chaperoned on a date and walk the mall giggling hand in hand it is a testament. Every small advance for one of these people is the answer to a parent’s reverent prayer. When a young man formerly locked away begins his own recycling business it is a victory for us all. These stories are a powerful reminder that while I might make the movies, it is Laura and her colleagues who quietly and without fanfare make the real magic happen.
Thank you Laura and … Bravo!
Center in Union fills need for rural families struggling with autism (Union, Mo.)
It was time for an art project, but Blake Walkenhorst, 14, wandered into the corner of the room. Read more.
Penarth students’ artwork chosen for national finals (Pernarth Times)
Four Penarth students have been chosen among the finalists of Beechwood College’s national art competition – organised to showcase the creativity of young people with an Autistic Spectrum Disorder (ASD). Read more.
‘Wandering’ Diagnosis Gets Green Light (Disability Scoop)
Starting this fall, wandering will be added to the list of descriptors doctors can use to diagnose individuals with autism, intellectual disability and other conditions. Read more.
Getting to know Special Olympians (Delaware Online)
As a high school sophomore, she began volunteering with the organization, coaching a team of athletes, spurred to do so by a cousin with autism. Read more.
RTA visits Dubai Autism Center to assess children needs (Dubai)
A team of Rail Maintenance Department, Rail Agency at Roads & Transport Authority (RTA) has recently visited Dubai Autism Center as part of RTA’s community-oriented initiatives aimed at boosting interlinks with all entities in Dubai particularly those concerned with social issues. Read more.
Eric Peacock is the GM of MyAutismTeam and Insider Pages and is passionate about empowering patients. He lives in San Carlos, CA with his wife and two kids – Jack (7) and Katie (4) and is a hopeless Red Sox fan. You can follow Eric and MyAutismTeam on twitter at @ejpeacock and @MyAutismTeam. Visit www.MyAutismTeam.com for more information.
The Top 7 People Who Helped One Mother’s Child with Autism
When Sharon Esch’s two-year old son Adam was diagnosed with autism, she threw herself into researching and finding the best team of people who could help her son. This wasn’t a turn-key process. In fact, it took a couple of years and lots of “trial and error” for Sharon to architect the best team of providers who could effectively help Adam thrive. Among others, her team included:
1) a speech pathologist
2) an occupational therapist
3) a child psychiatrist specializing in autism
4) a dentist sensitive to the needs of a child with autism
5) an understanding and calm hairdresser for Adam
6) an inclusive gymnastics instructor
7) A caring librarian at a toy lending library
Feeling like she was forging her own path, Sharon started from nothing and built Adam’s “autism team” on her own. She pored over resources online and offline to find providers, “hounded” her state’s early intervention offices until she got basic services, tested and walked away from some providers, and fine-tuned his team as Adam’s developmental needs changed.
Today, thousands of parents of children with autism are going through this same frustrating experience. They feel alone, and despite the fact that other parents have gone through this process before them, they don’t have a way to easily learn from their experience and end up re-inventing the wheel. This is the inspiration behind MyAutismTeam. www.myautismteam.com
MyAutismTeam is a free site for parents (recently launched in partnership with Autism Speaks) with a very simple belief: It should be easy for parents of children with autism to find the best providers around to help them.
On MyAutismTeam you can:
- Find other parents in the autism community near you & read their stories
- See the providers (the “autism teams”) other parents use & recommend
- Ask questions and share tips about providers
- Connect directly with other parents on the site
- Search a directory of over 30,000 autism providers and autism-friendly businesses nationwide – including all of the providers in the Autism Speaks and Easter Seals databases. (e.g. you can do a search for “occupational therapists in San Francisco, CA”)
- Add providers and autism-friendly businesses to the directory
Since launching the site in April, the number of parents signing up on the site has been doubling every two weeks. Parents of adult children, teenagers, and school-age children, representing the full range of the autism spectrum are connecting, sharing their stories and their recommendations. Families with recently diagnosed children don’t have to re-invent the wheel, and the ‘’veteran’ parents also exchange information with each other as their children go through new life stages such as adolescence or transition into adulthood.
Everything from Doctors to Swim Lessons
The “autism teams” include far more than your standard autism medical experts. For example, Sharon from Albuquerque, NM and Jennifer from Redwood City, CA – have recommended over 10 different providers each including…
- Occupational Therapists
- Speech Pathologists
- Barbers (who “get it”)
- Dentists & Dental Anesthesiologists
- ABA Therapists
- Developmental Pediatricians
- Family Practice Doctors
- Summer camps
- Swim teachers
- Respite care
- Music classes and more
All Parents in the Autism Community are Welcome
We just opened the beta of MyAutismTeam to all parents and providers in the autism community across the United States. Hundreds of parents are joining each week, and nearly every one adds a new provider we didn’t know about previously.
Please join us! To learn more, you can join MyAutismTeam and begin exchanging recommendations with other parents in the autism community today. Please visit http://www.myautismteam.com and please share this link with anyone you know that could benefit from the site.
You’re not alone and you shouldn’t have to re-invent the wheel.
Mercy Health Center to open school for autistic children in Oklahoma City (Oklahoma City, Okla.)
Children with autism and patients who need rehabilitation will find help in a new multimillion-dollar Mercy Health Center school and hospital. Read more.
Florida Tech in Melbourne helps Dubai government create autism program (Florida Today)
The international reach of autism showed up in a distant corner of the globe earlier this year, as a small group of educators from Florida Tech traveled to Dubai in the United Arab Emirates. Read more.
Extraordinary Artist Stephen Wiltshire Sees Cities Once, Draws Detailed Panoramas From Memory (ABC News)
Stephen Wiltshire is an accomplished artist known around the world for his amazingly detailed panoramic landscapes, which sell for thousands of dollars. What makes his talent seem superhuman is that he needs to see the landscapes only once to reproduce the images from memory. Read more.
Faking autism to get help for kids, according to claims made by Autism Spectrum Australia (Australia)
Some parents and doctors are colluding to deliberately misdiagnose school children as autistic so they can get help for other problems, a medical professional claims. Read more.
It’s a Match! Couple Makes Sure Service Dogs and Owners are ‘Perfect Fit’ (Cranberry Patch)
Jim and Susan Wagner of the Perfect Fit Canines organization work with Misty Pines Dog Park Company in Wexford to provide service dogs for people with autism spectrum disorders. Read more.
This post is by Alex Plank
In the latest installment of Autism Talk TV, Alex, Jack, and Kirsten talk about John Robison’s new book, Be Different: Adventures of a Free Range Aspergian. Be Different is must-read and I highly recomend ordering it on Amazon. John’s first book, an autobiography entitled Look Me in the Eye: My life with Asperger’s was an overnight success, landing itself on the New York Times bestseller list.
Unlike Look Me in the Eye, Be Different is a how-to guide aimed at teachers, parents, professionals, and individuals on the spectrum. However, you won’t be disapointed if you are hoping to read more of John’s firsthand accounts that made up the entirety of Look Me in the Eye as John uses his famous stories to illustrate points in Be Different.
Teacher’s Guide for Look Me In the Eye
Look Me In the Eye Study Guide
This month has been a tremendously exciting time in autism research, as our blog posts make clear. Naively, I’ve been waiting for a pause in the torrent of news to introduce myself. That’s not looking likely, so allow me to shoehorn a quick intro—and a couple questions for you.
Three weeks ago, I stepped into the newly created position of Autism Speaks’ director of science communications. It’s now my privilege to suds and squeegee your window onto the science that donor dollars are funding. I’ll also be enlisting our science staff to answer your questions and generally provide perspective on some of the splashy—and sometimes confusing—headlines in the national news.
By background, I’m a science journalist and medical writer. For the last 20 years, I’ve been a regular contributor to national magazines such as Discover, Popular Science, Parents, Parenting, and Prevention. I’ve also written a few science books for the general reader, the most recent being Good Germs, Bad Germs.
The science staff at Autism Speaks has always been passionate about communicating with families affected by autism and with everyone who cares about enhancing the lives of the remarkable individuals on the spectrum. I’m here to facilitate their conversation with you—in both directions.
Perhaps you’re a volunteer and want resources that can help you explain the nature and importance of the research we fund. Perhaps you have a child affected by autism and would consider participating in research. Perhaps you are a parent who is looking forward to answers and new treatment approaches that will help your child. Or perhaps you are a high-functioning teenager, college student, or other adult on the spectrum and want to know more about studies that relate to you (the link goes to just one example).
In whatever way you’re comfortable, we want to involve you in our scientific mission: To improve the lives of all who struggle with autism. To that end, I’d love your input on some of the new avenues of communication we’re considering. Would you please take a moment to answer our two-question survey? Please feel free to provide additional feedback in the comments section. Thanks!