By Mike Wasmer, Autism Speaks Kansas Chapter Advocacy Chair. Mike is the parent of two fantastic kids. Although a veterinarian by trade, he became active in autism advocacy and founded the Kansas Coalition for Autism Legislation (KCAL) after his daughter was diagnosed with autism in 2001. KCAL (www.kscoalitionforautism.org) is a volunteer group of parents, medical professionals and service providers who are dedicated to advocating for legislation to benefit the autism community in Kansas and nationally. In 2010, Kansas became the 18th state to enact an autism health insurance reform bill.
I am excited about Autism Votes’ recent introduction of the Autism Votes mobile text alert campaign. By texting “AVotes” to 30644, advocates will receive action alerts to support autism-related state and federal legislation directly to their mobile phone. This tool is exactly what we need to mobilize the autism community before the opposition tries to pull a fast one on us.
Let me tell you why Autism Votes mobile is important….
In 2009, the Kansas autism insurance reform bill was stalled and time was running out for us. Opponents of our bill had mounted a strike, pressuring our supporters to vote the bill down. We had just two hours to rally our grassroots, contact key legislators, gain the votes we needed, and get the Kansas House to pass our bill, which would require health insurance companies to provide coverage of medically necessary, evidence-based autism therapies.
With the help of our friends at Autism Speaks we dug into our grassroots. We made countless phone calls, sent thousands of e-mails, and posted updates on Twitter and Facebook asking advocates to contact their legislators.
Despite our best efforts, the motion to advance our bill failed by just 10 votes.
I learned several important lessons about politics and grassroots advocacy that session. First, Shelley Hendrix is a wise woman, so listen to her when she tells you, “The political process is a roller coaster. So kids, you’d better buckle up and keep your arms and legs inside the car because it’s going to be a crazy ride.” Secondly, there is a huge difference between growing your grassroots and effectively mobilizing your grassroots. Despite all of our calls, e-mails, and social network posts, when we needed a rapid response from the troops, we had to find a way to get the word out quickly and get advocates to take action immediately.
The Kansas bill was eventually signed into law this past April, becoming the 18th state to enact autism insurance reform. However, the new law is limited in its reach and until every person with autism in Kansas has meaningful access to the treatments and therapies they need, our work here is not yet done. With the new Autism Votes mobile text alert program, we will be stronger and quicker for the 2011 legislative session. We will be able to build on the 2010 law and expand coverage to all who need it.
I encourage you to sign up for Autism Votes mobile by texting “AVotes” to 30644 today and help your state achieve autism insurance reform!
This “In Their Own Words,” is written by Kammy Kramer, the Autism Speaks Family Services Community Liaison for the Minnesota Walk.
Autism became part of our world 7 years ago this month – and what a wild ride it’s been. Wow, looking back from this vantage point, it seems like a lifetime ago, and in many ways it was. It rocked our world a thousand times over, and set us off on a journey we hadn’t planned for and were ill-prepared for.
The early years were heart wrenching and overwhelming. Elliott didn’t have language or a way of communicating his wants and needs with us, and struggled with severe aggression – towards us, the general public, and his then infant brother, Henry. There were days that his autism was so big that the symptoms that accompanied his diagnosis seemed to fill every corner of our world.
As time has passed and so much has changed, there is much about the early years that I don’t remember. Maybe it is a way of protecting myself, maybe I can’t always handle thinking about the heartbreak we lived through and/or maybe I just hit 40 and can’t remember much of anything. What I do remember, quite vividly, is the isolation we felt in the beginning years. It hurt so much to see him struggle, and not intuitively know how to help your child.
It was no less painful when our sweet Ada began exhibiting the early warning signs of autism that we knew all too well. While her symptoms have never been as severe as Elliott’s, it hurt all over again to know the many struggles and challenges that she would need to work through. It felt unfair – it felt like just as we were finding our way as a family living with autism that suddenly autism defined us. At that moment, it was too much.
Everyone deals with grief in their own way, and has to find their path to acceptance in their own time. Tom and I have followed very different journeys over the course of these 7 years on our way to acceptance. While Tom struggled more following Elliott’s diagnosis, Ada’s was like a brick in the head for me, and I can’t really explain why. Maybe when Elliott had been diagnosed, we were so busy trying to research everything and get him help that I had unresolved grief at the loss of a “typical” life. For reasons I still can’t fully grasp, I literally found myself isolating from everyone and everything outside our house in order to process her diagnosis and my grief in the only way I could. It was almost as if I had to allow myself to walk straight through the pain rather than trying to step around it before I could make peace with it. I’m grateful to be in a much better place now, but appreciate that the experience has allowed me to gain perspective on the various struggles we all face.
Enough with the ugly stuff.
Last week, something momentous happened at our house that we’ve been excited about, but somewhat reluctant to share. Elliott started 3rd grade as a full-time student at a school for the first time in his life. This is such an amazing accomplishment for him – he’s overjoyed to have a school to call his own. He so wanted this for himself, and has worked incredibly hard on skills that for most kids develop naturally in order to accomplish this. With determination, he set a goal and made it happen. Like most new experiences, school will certainly have its share of successes and areas for Elliott to continue working on, (it already has as evidenced by today’s report card) but we celebrate his achievement because it is his to own. He continues to teach us so much.
Ada is now 4, and is doing amazingly well! Her symptoms at diagnosis were not as severe as Elliott’s, and she is responding very well to early intervention. Because of our family situation and our amazing team of therapists from the Lovaas Institute, we identified her challenges very early, and got her the help she needed immediately. Now, at 4, she is making incredible gains, is quite the social butterfly, and is happy and very interested in her world. We love watching her personality develop (most days!) and cherishing the bond that she has established with her brothers.
Then their is our sweet, sensitive, charming 8-year-old, Henry. He’s neuro-typical, and holds the middle child position in this family sandwiched between a brother and a sister with autism. As many families with special needs may relate, we’ve struggled over the years to find balance so that Henry does not grow up resenting autism and the attention his siblings have needed. He’s a great guy who found a way to express his unique perspective of the world through his art. It’s abstract, of course.
We participated in the Minnesota Walk Now For Autism Speaks, and look forward to having some fun with lots of other families and friends who are part of the autism community. While our journey with autism continues, we are grateful for many things. We will walk to celebrate how far we have come. We will walk because we have a very excited 3rd grader who now has a school to call his own. We will walk for a little girl who has made incredible strides in her young life, loves her brothers, and looks great in a tutu. And we will walk for their brother, the middle guy, who chooses patience and compassion even on his most challenging days, because families are families, no matter what . . .
“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 firstname.lastname@example.org. 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.
New center to support children with autism (The Chestnut Hill Local)
Soccer team, art class, drama club – throughout September, parents sign up children for interesting and enjoyable extra-curricular activities. Children with autism spectrum disorders, however, are often unable to participate in these activities because of behavioral and communication challenges that accompany their condition. Read more.
Film Takes Autism on the Road (The University of Vermont)
No one is going to mistake Wretches and Jabberers for Easy Rider. Yet the new documentary from director Gerardine Wurzburg could arguably be filed under “road movies” together with the iconic sixties film. Read more.
Barn at Spring Brook helps special needs kids experience life down on the farm (Pocopson Township, Penn.)
Ask Mary Beth Drobish if she’s ever seen the results of the animal therapy she provides at her Pocopson farm firsthand and her eyes immediately get moist. Read more.
Distraught parents of disabled children warn of desperate fight for help (Australia)
Complaints about the state’s disability services and the multitude of non-government organization it funds are ignored, leaving people vulnerable to abuse and neglect, a parliamentary inquiry has heard. Read more.
Program enables adoption of disabled foster kids (Miami Herald)
When S.M. became a foster child four years ago, she didn’t speak a word. At age 7, S.M., who suffers from mental retardation, had just been removed from her birth parents, who had neglected her. Caring for the little girl was going to cost money, and lots of it. Read more.
As many parents know, there currently are no available medical treatments for ASD targeting core autism symptoms. Available medications target symptoms associated with ASD, such as hyperactivity, irritability, anxiety, or depression. Although the available medicines have helped many who struggle with the challenge of these symptoms, these drugs do not address the difficulties in the areas of social and communication deficits or repetitive behaviors and restricted interests.
Recently, hope has recently been kindled in a new drug for ASD that developed out of basic research on the neural mechanisms of Fragile X syndrome. Back in 2005 research in Dr. Mark Bear’s lab at Harvard showed the Fragile X mutation affects communication between neurons. Specifically, the mutation results in an excess of an excitatory neurotransmitter called glutamate, which impairs communication between neurons by making them over-stimulated. Seeing the potential to help families, a small company called Seaside Therapeutics was started to see if certain drugs could help reduce the level of excitability of neurons.
The drug, arbaclofen, is the first drug being tested. Arbaclofen works by increasing GABA, an inhibitory transmitter, which counteracts the over-excitability of cells. The preliminary results of a trial conducted with children with Fragile X syndrome looked so promising that Seaside Therapeutics announced the results on this year’s meeting of the International Society for Autism Research (read a review of that meeting’s highlights). More recently, arbaclofen has been tested in children with ASD without Fragile X. The results of this trial have been reported in the news. The trial treated 25 children and adolescents with autism for 8 weeks and the preliminary data revealed that arbaclofen was not only well-tolerated but also increase sociability and eye contact, and reduced tantrums and anxiety.
Of course, the testing of this drug continues and a review of the data by independent scientists is essential for evaluating the true benefit of this new drug, however these preliminary results offer good reason for hope and that news is always worth sharing.
On Sunday, October 10 (10.10.10) Autism Speaks will be participating in a global event, known as One Day On Earth. Across the planet, documentary filmmakers, students, and inspired citizens will record the human experience over a 24-hour period and contribute their voice to the largest participatory media event in history.
Autism Speaks needs you! Help us show the world what living with autism is all about. Share the joys, frustrations and victories that you and your loved ones experience by filming a day in your life on October 10, 2010.
One Day On Earth is creating an online community, shared archive and film. With your help, One Day On Earth will showcase the amazing diversity, conflict, tragedy and triumph that occur in one day.
What happens in a day can make a huge difference. Let’s share and show the world! Upload your footage to the Autism Speaks profile on the One Day On Earth site.
Autism Speaks looks forward to partnering in this exciting project with World Wildlife Federation, American Red Cross, United Nations Development Programme, Vimeo, Creative Visions Foundation, and many others.
Get involved and join the Autism Speaks Page!
Autism Advocates to Demand Apology from Sharron Angle (The Atlantic)
Sharron Angle’s campaign has defended a comment she made in 2009 about a requirement that insurance companies cover autism treatments, and autism advocates are now demanding an apology. Read more.
Girls create playground for autistic children (Bremerton, Wash.)
Two girls in Bremerton have accomplished something that adults didn’t even try to tackle. Best friends Paris Harrison and Alanna Nixon dreamed of tackling a project bigger than planning another sleepover. The girls asked Kitsap Mental Health Services for community service suggestions. Read more.
Teen Band Growing Up (Port Washington, N.Y.)
Teen band NTOR took the stage at La Motta’s Sunday night, drawing a family-friendly crowd to the adult music hotspot, while raising funds for the Long Island Chapter of Autism Speaks. Read more.
Autism and the SCERTS Model is Conference Topic (Binghamton, N.Y.)
An internationally recognized expert on education for children with Autism Spectrum Disorders (ASD) will be the speaker at a two-day educational event on Autism and the SCERTS Model co-hosted by UHS’s Department of Physical Therapy and Rehabilitation. Read more.
Superior sportsmanship (UK)
I have been fortunate to see and do a lot of things in my 59 years but what I saw last Friday night in Menomonie near the end of the Superior-Menomonie high school football game has taken over the top spot in any experiences I’ve been lucky enough to have. Read more.
This is a guest post by Lorri Unumb, Autism Speaks senior policy adviser and counsel. Lorri also teaches “Autism and the Law” at the George Washington University Law School.
Autism is a hot topic for discussion at various types of conferences these days, from epidemiologists to economists to educators. You still, however, don’t often see autism on the agenda at legal conferences. That’s why I was so excited over the summer to have the opportunity to speak about autism legal issues at a national conference of legal aid attorneys and encouraged by the keen interest demonstrated by the lawyers in attendance.
Every state in the nation has at least one legal aid organization, which provides legal services to the poor, and a protection and advocacy organization, which provides legal services for the disabled. Lawyers who work at these organizations, as well as public defenders (who work in the criminal arena), are typically members of the National Legal Aid & Defenders Association (NLADA). As set forth in its website (www.nlada.org) NLADA champions effective legal assistance for people who cannot afford counsel, serves as a collective voice for both the civil legal aid and public defense communities throughout the nation, and provides a wide range of services and benefits to its individual and organizational members. Founded in 1911, NLADA is the oldest and largest national, nonprofit membership organization devoting all of its resources to promoting justice for all in the United States.
Among its activities, the NLADA holds national conferences and trainings for public interest lawyers. My husband, Dan Unumb, who is Director of Litigation at South Carolina’s legal aid organization, proposed trainings on “Representing Families with Autism” for two of NLADA’s summer conferences held jointly in July in Chicago. NLADA enthusiastically accepted and supported the proposal.
The first workshop was presented as part of the Litigation and Advocacy Directors Conference, which is designed for experienced litigation and advocacy directors to assist them in identifying, promoting, and pursuing cutting-edge legal issues in their programs. A panel of five legal experts educated the attorneys on autism legal issues ranging from health insurance to special education to Medicaid. Presenting attorneys included Sue Tobin of Ohio Legal Rights Service and Sarah Somers of National Health Law Project on Medicaid issues, Tracey Spencer Walsh of Mayerson & Associates on special education law, and Dan and me on health insurance and other autism-related issues.
The second workshop was geared to front-line legal aid attorneys who handle day-to-day representation of low-income or disabled clients. At this workshop, Dan and I were joined by Kirby Mitchell, Managing Attorney of one of South Carolina Legal Services’ largest offices, to present a broad overview of legal issues surrounding autism including health insurance, special education, Medicaid and life-planning issues such as guardianship, conservatorships, custody and child support, hospital collection defense cases, bankruptcy, Medicaid trusts, tax planning, and Social Security disability actions.
The range of legal issues a family affected by autism may face is vast, and the need for lawyers, judges, and judicial staff to be educated on them is equally great. This outreach is critical to improving legal representation, judicial decisions, and the overall response of the legal system to the complex challenges posed by autism. This summer’s presentation was a good step in the right direction, and Autism Speaks is committed to making further inroads toward ensuring effective legal representation of families with autism.