The following blog post by an Army Sergeant Major deployed to Afghanistan, who must remain otherwise anonymous, demonstrates vividly the extraordinary challenges faced by our military members raising children with autism. Visit ‘Welcome to Stim City‘ to follow Mrs. Sergeant Major’s Blog and to read original post.
Military families will finally get a chance to tell their stories to Congress on Tuesday, January 31. Learn more here.
The satellite radio crackles to life; “Iron Gray TOC, this is Butcher 6 receiving indirect fire at this time”. The radio operator answers the call; “This is Iron Gray TOC. Roger, requesting air support at this time.”
Troops in Contact (yes that means what you think it does) were a daily occurrence as an Infantry Battalion Operations Sergeant Major in Afghanistan. I had dealt with quite a few of these by February 2010 while working the Tactical Operations Center (TOC) in theater. I had learned to deal with them in a cold, detached manner dispensing assets such as artillery, air support and helicopter support to assist in the fight against the Taliban.
So when I heard those words “[RM] has autism” through a poor overseas cellphone connection I was initially unmoved. My training kicked in. Clear the airspace and give me a fire mission of 155mm artillery.
It wasn’t until I got back to my bunk after a 17-hour shift did the words sink in. AUTISM!? Artillery isn’t going to help that.
Maybe it was the distance from home or the 130-degree Afghanistan heat that removed me from the reality of what I had heard. I just could not believe my little girl had autism. Yes, she was born with multiple disabilities but autism was never on the radar. Having a nephew on the spectrum, I knew the very broad and somewhat vague meaning of an autism diagnosis, but stumbling through one in a war zone left me asking what is autism? Probably not a good idea to sidetrack my Intelligence Section asking them to research that one for me. To say I was busy during this deployment would be a gross understatement. The TOC was the heart of the Battalion’s operations and the heart never stopped beating. However, I had managed to find a few spare moments to Google “autism” which confirmed my suspicion that artillery was not the kind of support needed to be called in this time around. Instead, my Googling from Afghanistan proved that the primary assets for this mission would include treatments such as Applied Behavior Analysis (ABA), speech, occupational and physical therapies. I assumed RM’s school would be all over that. Evidently, as it turned out the school system in our town was not a “Friendly” element.
Never leave a fallen comrade.
Failure in my business is not an option and it would appear that my town was accepting defeat and leaving my little girl behind. I was appalled. Months went by with frequent calls from Mrs. SGM sharing the emotional and often fruitless results of meetings with the town, special education lawyers and one very rude town special education administrator. It began to affect my performance. I struggled to focus on my daily responsibilities and at times had to force the issue of autism out of my mind. Staying focused meant ignoring my family so that I didn’t get a soldier killed in theater.
I decided to weigh in on the issue with the town. Lucky were the town personnel who were failing my child that were out of range of my artillery support. I think one of the frustrating things for me was the inability to affect how the fight with the town was going from Afghanistan. Mrs. SGM gave updates almost daily. I cannot take credit for the battle that was fought and won in regards to getting RM her required therapies at an outplacement school. Mrs. SGM led that assault and is now deep in the trenches to change TRICARE military insurance to make autism benefits accessible to all dependents as standard care. Doing so will not take the shock, fear and disbelief out of receiving an autism diagnosis, but it will help diminish the confusion, frustration and roadblocks to success in getting our kids what they need.
TRICARE should be like Combat Support. It should be there when you need it with no questions asked or forms to fill out and should be ready to provide cover for all Troops in Contact including our precious military children with autism.
This is a guest post from Mark L. Olson in response to the New York Times article, ‘Navigating Love and Autism.’ Mark lives in Henderson, Nevada where he is the only parent of a 16 year old daughter with autism; Chairperson, Community Living & Employment Subcommittee, Nevada Commission on Autism Spectrum Disorders; and, President & CEO, LTO Ventures, a 501(c)(3) nonprofit company developing live/work/play communities for adults with autism.
I read with mixed emotions the December 26th New York Times article “Navigating Love and Autism” about Jack and Kirsten, a young couple with Asperger’s Syndrome discovering how to have a relationship with each other. The romantic in me found their story inspiring and hopeful. But as the only parent of a teenage daughter with autism, another part of me felt frustration about the lack of attention to and help for autism’s “fly-over” population — the huge group of teens and adults who are often nonverbal, may never expect to live independently, yet deserve the chance to choose the kind of life they want to live.
“Fly-over” is a term I heard often growing up in the Midwest and attending University of Kansas. It refers to the majority of the US between the East and West Coasts that airline passengers look down on when they fly over. It also refers to a mindset in the media that the most valuable audiences are located in New York and Los Angeles, and to which their programming overtly caters.
Autism is a broad spectrum disorder just as the U.S. is an expansive land mass and melting pot. A favorite expression in our community is that “if you’ve met one person with autism, then you’ve met one person with autism.” Our community and efforts to help persons with autism benefit from all the awareness we can generate, but sometimes it feels like that attention falls largely onto two ends of the spectrum.
At one end, thanks to organizations like Autism Speaks and others, kids as young as 18 months benefit from more research dollars than ever directed toward finding the cause of and a cure for autism, while insurance mandates are in effect in the majority of states that emphasize funding for ABA therapy and early intervention, diagnosis, and treatment.
At the other end of the spectrum are the Aspies and HFA teens and adults like Jack and Kirsten who are the focus of media coverage, movies, federal programs such as Medicaid and the President’s Year of Community Living. They are also the primary beneficiaries of the Protection and Advocacy (P&A) Network created by Congress and self-advocacy organizations bent on eliminating all barriers to living and working exactly the same lives as “typical” Americans.
But what about the fly-over population? My daughter is one of them and we live this struggle every day. (I also run my own 501(c)(3) nonprofit company developing live/work/play communities for adults with autism and chair a subcommittee for the Nevada Autism Commission on community living and employment.) I see this issue from many perspectives and I’m increasingly disheartened by the chasm of resources and choice expanding between our community’s newest affected and our most capable.
My daughter is 16 and nonverbal, although she can hear and understand some of what is said to her. She’s not high-functioning enough to enjoy true independent living, and diagnosed at age 12 she was too old to benefit from aggressive early intervention protocols. I expect she will stay in her special needs school until her IDEA eligibility runs out and we are planning for guardianship now. But I’m also 39 years older than her and while I like to believe I’m immortal, I’m pretty sure I’m not. So that means planning for where she is going to live, what kind of work she might do, and what chance at a social life she can expect.
Let’s start with housing options. My daughter deserves the right to choose any residential setting in which she wants to live. It is estimated that 85% of adults with autism live with parents or a family member until they can no longer be taken care of. As with many kids with autism, there are daily living skills she does well, and others (bathing, feminine hygiene, house cleaning) that are a challenge. Some disability self-advocates argue her only option outside of my home should be in her own apartment or home no closer than 1000-1500 feet from any other disabled person.
She can’t live alone in a scattered site apartment because she doesn’t know how to cross a street safely, or how to avoid neighbors who might bully, exploit, or abuse her. It’s a ludicrous notion to expect her neighbors to be her “it takes a village” safety net. She can feed herself, but she cannot use a stove or microwave to prepare a hot meal. A setting where she could go to eat or pickup meals of her choosing would be ideal.
A planned residential community optimized to accommodate her autism such as a disability-based campus or farmstead would be a great solution. Unfortunately, Medicaid, certain self-advocacy groups and the P&A Network are doing everything they can to deny her freedom of choice and impede development of innovative settings. (Read more at “Choice v. Olmstead“)
Now let’s talk about work. My daughter is blessed with exceptional physical strength and decent gross motor skills. With supervision she can do fine motor projects and follow multi-step instructions…for a while. But she cannot speak, read or write. She will never be able to pursue competitive employment on the open market, but that doesn’t mean she can’t earn a minimum or higher wage. A work environment created to accommodate and develop her abilities would be ideal. But again the same forces are at work to eliminate these optimized settings as discriminatory.
Would she like a social life? A relationship like Jack and Kirsten? I don’t know. I do know she is highly sociable and enjoys the company of affected and typical kids and adults. A setting where she could freely walk around, meet up and hang out with persons like her and enlightened members of her surrounding community would be ideal. But transportation, availability of programs, and lack of funding marginalize anything except a public park or shopping mall.
Jack and Kirsten’s story is informative and heartwarming. But as we enter 2012, I implore the autism community, media, government and especially those self-advocates who resist progressive thinking and innovation, to not forget the impact they have on our “fly-over” population. Their story deserves to be told too. They deserve the right to choose how they want to live.
For more information:
Autism Speaks hosted its 6th Annual Autism Law Summit on October 20-21 in Salt Lake City, Utah attracting 100 parents, advocates, lawyers, legislators and lobbyists to discuss autism insurance reform through legislation and litigation. This year’s summit was co-sponsored by the Utah Autism Coalition and the University of Utah S.J. Quinney College of Law.
At this year’s summit, Lou Melgarejo received the “Speak Out” award in recognition of “Fixing” Autism, a video he produced in honor of his daughter Bianca. The “Speak Out” Award was created to recognized those who go above and beyond in raising awareness of autism to the public through the media. As part of the award, Autism Speaks Co-founders Suzanne and Bob Wright will make a personal donation of $1000 to the Autism Speaks mission area of the recipient’s choice. Watch the video and read Lou’s acceptance speech below.
Lou’s Acceptance Speech
“It is a real honor and a privilege to be here at the Annual Law Summit. Before I get started, I thought I should warn you that Representative Boehner has teased ME for crying too much.
This marks the second time that I have watched my “Fixing” Autism video in its entirety. It’s really tough for me to watch. I have, however, tried to read each and every comment, blog, status update, tweet about my video. The response has been overwhelming. It sounds as though I have shed as many tears reading the comments as my video has elicited from those that watched it.
As of today, “Fixing” Autism has over 93,000 views. As flattering as that is, it also makes me a touch sad. That number needs to be way higher. Those that are aware of the video and its message to end health care discrimination against people with autism spectrum disorder, and the disparity in funding are already converts. I am glad that they could take comfort from the video, but really they are not the ones that need to see my video. It is the kid that bullies a shy and awkward classmate, it’s the cranky old lady that yelled at my wife for having our daughter on a “leash”, it is the person that glares at you with a scowl because you can’t appear to control your kid, it is the family member who, when you tried to confide in them that your child was on the spectrum, they tried to tell you that your child would grow out of it… instead of just saying, “I’m so sorry. How can I help?”
The person I am trying to reach is me. Not the guy that is standing before you, but the guy that I was only 6 years ago. That guy is funny, liberal, sensitive, accepting of people with differences, but so caught up with the day-to-day minutiae of his own life that he can’t be bothered with charity work. “Everybody has a cause about something” I would say. I was so put off by everybody championing whatever disease, condition, country, animal, religion people were trying to raise money for that I started my own grassroots movement on Facebook… “The Cause Against Causes”. My first real advocacy.The goal of my movement was apathy… if you were up to it. What at first I thought was funny and tongue in cheek, now makes me sad and ashamed. I cringe when I look back at where I was.
What a shame that is took my own child becoming diagnosed with ASD for me to be motivated to become an advocate for a cause. But I don’t think that my story is an abnormal one. The vast majority of people championing a cause are doing so because somebody they know has been affected. These causes are personal. They mean something to people. It isn’t just about shaking others down for money.
So how do you get a guy like me to care about a cause if they are not affected? That is the question that runs through my mind pretty close to every waking minute of my day. How can I affect change? How do I make people see the injustice I see?
I know TV, and I know a little bit about story telling. So I have to use what I know. That is how the video came about. I have worked in the television industry for 18 years. But I can honestly tell you that of all the big events I have covered and shows I have directed, there isn’t one thing that I have done that comes close to the pride I have for my “Fixing” Autism video. The fact that an organization that I believe so strongly in like Autism Speaks helped me to spread the message, and is honoring me today with this award means more to me than I could ever put into words.
Thank you Autism Speaks. Thanks to Marc Sirkin for his amazing support and reaching out to me on Twitter to tell me how much he believed in my message. Thank you to Mike Wasmer for your support and for letting me know that my story is not an uncommon one. It is good to know you are not alone. Thank you to the Wright family. Bob doesn’t know this, but in all my years in TV, the only other recognition I have received was from NBC when he was in charge. Most importantly I want to thank my family: Thanks to my parents for all of their support;to my beautiful wife Elsa for hanging in there on this ride, life can knock you down sometimes, but we have been fighting back and trying to not let it destroy our marriage. Thanks to my kids Sofie and Luis. They are the greatest siblings in the world and they fill my life with laughter every day. And to my beautiful Bianca… she is a priceless gift. In six short years, she has taught me more than my previous 34. I am a better person for her being in my life and I love her without condition.
In closing I just want to let you know that I am aware that I am preaching to the choir here, but the choir has a very important job. It is up to the choir to fill people’s ears up with music and often times to move people to join the congregation. Let’s make certain that when we leave here this weekend that we are making noise, not just to those that are already in our flock, but to the world in the hopes that our numbers will rise. Thank you.”
John Scott Holman struggled with undiagnosed autism for nearly 25 years. His diagnosis has enabled him to embrace his individuality and move forward. He writes and speaks publicly about his life with autism, hoping to inspire greater understanding and acceptance. Visit his Facebook page here.
Sometimes I think my father is a bit autistic. His autistic tendencies are entirely too mild to warrant a diagnosis, but they are noticeable enough to irritate me, and I’m the genuine article! Like any certified aspie, my father’s entire world revolves around his special interest – baseball. I swear, that man has managed to turn every conversation of his adult life into a longwinded monologue about the great American past time…
“You know, Dad, I was reading about that AIDS epidemic in Africa…”
“Son, let me tell you something about AIDS. AIDS is a lot like professional baseball. You see, you don’t realize how physically taxing it is until you have experienced it yourself…”
Conversations like these make me more mindful of my own autistic behavior – I feel your pain, Mom! My obsessions are regarded as symptoms of a disorder, yet when my Dad carries on about baseball, no one thinks anything of it. What gives?!
The Holman family is a baseball dynasty. My father and uncle both played Major League Baseball and my kid brother is now enjoying minor league success. So what happened to me? Genetic research may or may not yield an explanation for my autism (my mother blames the enormous quantities of yogurt she consumed during her pregnancy). Either way, I’m not much of an athlete.
As a bouncy autistic kiddo, my father’s baseball career took me all across the country. Life moved with the urgency and lightning pace of an amphetamine bender. My mother carted me across the country, guided by the distant glow of stadium lights, chasing my father’s career to the next city, the next ball park, one more win, one more loss… Like wise men following a star, we hoped those lights would lead us to our salvation, or at least a place, any place, we might one day call home.
No wonder my father is still obsessed – baseball is a dream that never ends. Spectators are filled with admiration and nostalgia, as their heroes round the bases, chasing the dream all the way home.
Back then, I had no way of knowing that my life was unusual. I was simply along for the ride – I didn’t understand what all the fuss was about. I’d met few children outside of the insanity of professional sports. Didn’t all fathers wear crisp white uniforms and travel the country playing baseball for thousands of adoring fans? Didn’t all mothers frantically drag their children through airports and locker rooms?
My father recalls being interviewed for national television while standing on the field of the King Dome, struggling both to answer questions and prevent me from wiggling out of his arms. Cocky and playful as always, Ken Griffey Jr. sauntered up to us, snatching the microphone from the reporter. “So little buddy,” he said, grinning my way, “do you think the Mariners will win the game today?” He pushed the microphone into my face and awaited my response.
“Not today,” I sighed. “You won’t win today… so we should just go home.”
My poor father had no idea what to do with me. He often tried to persuade me to go out back and play a game of catch with him, but I was usually too busy watching “Fantasia” or “Alice in Wonderland” – Dad had good reason to suspect his five year-old boy was a homosexual pothead.
In elementary school, my father somehow managed to convince me to join a little league team. He came to regret it. I spent every game spinning around in the outfield, oblivious to the action in the infield. Balls often whizzed by me, thumping onto the grass, and rolling slowly towards my spinning body. “Scotty, you just lost us the game!”
“I did? Does that mean we can go home now?!”
I was no better at batting than I was in the outfield. I rarely swung the bat, and couldn’t seem to hang on to it when I did, hurling it farther than most of my teammates could throw the ball. I may have hit a few nine year-old outfielders in the kneecaps. Once, and only once, I managed to get a hit. I heard a crack and watched the ball soar far into left field. Overjoyed, I turned and skipped back into the dugout… forgetting to run the bases.
When I was particularly uncooperative, my father would tell me that I was adopted from a pack of gypsies. “Akmed!” he would shout. “You do know your real name is Akmed Megelbgy, right? We changed it when we adopted you, but you’d better get used to Akmed again, ’cause I’m sending you straight back to those gypsies if you don’t let the cat out of the refrigerator!”
Was Dad right? Was I adopted from strange, rootless people? Sometimes I wonder… I’ve always felt out of step, and have spent my life searching for a place I might belong. I’ve searched among the privileged, the pious, the decadent, and the depraved. You know what I’ve discovered? We are all looking for the same thing.
Whether hunched over a keyboard writing humorous, self-deprecating blogs about autism, or sliding into home base, we are all searching for love and acceptance. My father now recognizes my passion as the same restless yearning that drove him to success. An electric urgency comes over him when he talks of baseball; he lights up from the inside. This is especially true when he speaks of his minor league career.
Scholarly and uncoordinated as I am, I connect with his stories of traveling the country in a bus crammed with excited and terrified kids, all of them united by a burning hunger to prove themselves. His voice quivers with excitement when he tells these stories, and I know that I was not adopted from gypsies. I am truly my father’s son… we share the same passion.
We all want to earn our place in the sun – we all want to be valued. However, I’ve learned that you cannot buy your way home. Your true family does not need to be impressed; they love you for who you are, not who you once were or who you may one day be.
I was certainly not the son my father envisioned, and I’m sure a part of him mourned the loss of his dream child, but he never made me feel like a disappointment. He may not have understood me, but he embraced me nevertheless.
Dad still hasn’t figured me out, but that’s alright – he loves me. Occasionally, he will try to make sense of my behavior, but I’m quick to remind him that the effort is unnecessary. “You know son, autism is a lot like professional baseball…”
“Not today, Dad… Not today…”
“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.
This post is by Peter Bell is executive vice president for programs and services at Autism Speaks. He oversees the foundation’s government relations and family services activities and also serves as an advisor to the science division. Peter and his wife, Liz, reside in Pennington, New Jersey with their three children. Their eldest son, Tyler, has autism.
As the summer winds down, it is a good time to reflect on the Garden State’s accomplishments in addressing the needs of its citizens with autism and outline my back to school wish list. New Jersey has found itself in a leadership position in serving residents affected by autism spectrum disorder (ASD), by establishing some of the best private and public schools serving students with autism. (Autism is a general term used to describe a group of complex developmental brain disorders known as Pervasive Developmental Disorders.)
Current, forward-thinking policies have New Jersey on track to secure our legacy due to several other factors: the passage and enactment of autism insurance reform legislation in 2009 for evidence-based interventions, continuation and support for a Governor’s Council on Autism Research, establishment of an Office of Autism, passage of First Responder’s Training, and an adult service initiative on housing that will be a catalyst for affordable and appropriate housing options for adults with developmental disabilities. In addition to the formal mechanisms that help to improve our human services infrastructure, there has also been a thoughtful and concentrated effort to embrace the autism community’s challenges by Gov. Chris Christie, the First Lady and other administrative officials.
Notwithstanding all of these important efforts, are they enough to really support the impending needs of people with autism as they transition into adulthood? Today, it is estimated that there are approximately 1.5 million Americans with living with ASD throughout the country, with about 80 percent under the age of 21. According to the Centers for Disease Control, New Jersey’s one-in-94 autism prevalence rate is one of the highest in the nation. Using simple math, we have at least 25,000 fellow New Jersey residents, most of them children, living on the autism spectrum.
Creating a New World
Some people have described the wave of children with autism that will need adult services in the coming years as an impending “tsunami” of required services. But using the tsunami metaphor implies a disaster, and I believe we have the opportunity to create a different world — a world in which adults with autism will be fixing our software, making our keys at Home Depot, carefully tending their gardens at their homes, volunteering at local fundraisers and making New Jersey a great place to live as important contributors to our society and taxpayers. Far too many adults with autism and other developmental disabilities are unemployed, sitting at home and isolated from their peers when they age out of their educational entitlement.
So my back to school wish is to review our intent and our mandate to prepare this group of children for the rest of their lives. Congress, through the transition services mandate of IDEA (Individuals with Disabilities Education Act,) wanted students with special education needs to transition smoothly to meaningful adult outcomes. The act defines transition services as “a coordinated set of activities for a child with a disability that is designed to be a results-oriented process… to facilitate the child’s movement from school to post-school activities, including post-secondary education, vocational education, integrated employment (including supported employment), continuing and adult education, adult services, independent living or community participation…”
Certainly, this is a powerful piece of legislation that directly establishes the broader competencies for passage from adolescence to adulthood. But once the educational entitlement of IDEA ends (at the end of the academic year in which the student turns 21 in New Jersey), there is an even greater need for individuals and families to be educated on the supports afforded to adults with developmental disabilities. Most families are disheartened to know that there are no guarantees for adult services. There is a dearth of programs for adults with specific needs and the current system is beyond capacity.
One of the most significant challenges is funding for services. Funding can directly impact the ability for a provider to expand services to meet the growing demand and can also affect the ability to recruit and retain direct support professionals. The primary long-term funding source for adults with developmental disabilities is Medicaid’s Home and Community Based Waiver Services (HCBS). Currently, these are being revised to provide a more global waiver for all services and that reform is happening in New Jersey. As services become more self-directed, individuals and families must insure that HCBS waivers are written and implemented to serve adults in those services that best meet their particular needs.
Medicaid waiver services are based on eligibility and the availability of resources, and have limitations in service capacity. According to the state Division of Developmental Disabilities, there are approximately 10,081 individuals enrolled in our Medicaid waiver program and the wait list is over 8,000 (including 4,000 in the “urgent” category). It’s not hard to see the unsustainability in a service system that is unprepared for the number of adults aging out of their educational entitlement. Most families will face a crisis before they receive services under HCBS. It makes perfect sense to coordinate a collaborative system of supports that is defined prior to students aging out of their entitlement.
The Transition Tool Kit
Even though we have defined what type of transition services an adult with autism needs (Autism Speaks recently developed a Transition Tool Kit for adolescents with autism), there are limited services that have training and a specific focus on the needs of this growing population. While we are making great strides in understanding the needs of individuals on the spectrum, there is still a great deal we don’t understand about autism. As our leadership debates reforms in our federal programs, we are comforted to know that our New Jersey delegation in Washington understands the challenges and opportunities that befall the autism community, and is taking action. On September 30, the Combating Autism Act of 2006 (CAA), essential legislation that is central to the federal government’s response to the autism health crisis, will sunset. U.S. Senator Robert Menendez (D-NJ) and Congressman Chris Smith (R-NJ) have both introduced legislation that will reauthorize the CAA by extending this legislation at current funding levels. Longtime champions of the autism community, their continued support on legislation so vital to the needs of people on the autism spectrum is gratifying. The research performed under the CAA has advanced, and will continue to advance our understanding of how to help individuals with autism and their families negotiate their lives.
Government can’t do it all. The private and philanthropic sectors have to do their part. Autism Speaks, the nation’s largest autism science and advocacy organization, has invested in autism research in New Jersey through grants to Rutgers, UMDNJ and Princeton University. In addition, the organization has made community service grants to organizations across the Garden State that are directly delivering services in innovative and replicable ways.
We recognize that government cannot solve all the issues alone and we are poised and ready for the challenge ahead of us by highlighting new and innovative employment opportunities, identifying affordable housing that adds value to neighborhoods, and keeping our eye on the prize that all New Jersey residents have the opportunity to work and thrive in our state. Working collaboratively, the public and private sectors can and must rise to the occasion and meet the needs of New Jersey’s current and future adults with autism.
To read full article, please visit NJ Spotlight.
Lou was overwhelmed by the community response to his video “Fixing” Autism that was featured in, Power in Unspoken Words blog post. As a follow-up, we’d like to share this, created by Lou for the community.
For more from Lou, please visit his blog, Lou’s Land!
Autism Speaks wants to honor the fathers of children with autism. Please tell us how your life has been challenged and enriched by your child. What have you learned that might help and inspire other dads? What is your favorite memory with your child this year?
We will include your responses in this month’s Community Connections. Sign up here to receive the Family Services Community Connections eNewsletter!
You can show your Father some love by sending him a ‘Father’s Day eCard!’