eBay Giving Works is sponsoring a contest through July 4 – the top three favorite nonprofits will win grants of $15,000, $10,000, and $5,000.
It will take you less than a minute to help us win.
Click http://donations.ebay.com/charity/charity.jsp?NP_ID=7649 and “save as favorite.”
If this does not work:
- Click on www.ebay.com/mynonprofit.
- Click on the box which says “Find your favorite.”
- In the search box “Nonprofit name or keyword,” type AUTISM SPEAKS.
- Click the box “Save as favorite.”
- Ask all of your friends to choose Autism Speaks using word of mouth, e-mail, Facebook and Twitter.
1 in 110 kids is affected by autism – help Autism Speaks win $15K from eBay Giving Works at http://www.ebay.com/mynonprofit #favNPO
Thank you in advance for your support.
*NOTE: You need to be a registered eBay user.
I feel hope every year at the Greater Hartford Walk Now for Autism Speaks.
I feel hope when my son tells me he is “proud he has autism.” I feel hope when his brothers say they had fun at the Walk for the first time.
At this year’s Walk, hope warmed me every time I personally met a mother I’ve spoken to after her child was diagnosed and she said, “Thank you.” Hope fed my tired spirit when my son’s friend and his entire family joined our Walk team. Hope inspired me, as 8,500 people lined up to walk for their sons, daughters, grandchildren, nieces, nephews, friends, and neighbors. Hope brought me to my knees as I watched families simply “be” with autism, not afraid of judgment or criticism. And hope brought me to tears as I gathered our legislative champions who I have worked so hard to get to join in the fight for our loved ones.
In 2009, Connecticut became the 13th state in the nation to require private insurers to cover the diagnosis and treatment of autism. Enactment of this bill finally ended autism insurance discrimination in Connecticut, but more importantly it brought hope to thousands of families.
Autism is now a buzz word in our state capitol of Hartford. Legislators are taking note of its impact on their constituents. We have champions who know our struggles, even know our kids’ names.
There is so much more to do to help the nation’s families affected by autism, so much more to do in Congress and in our state capitols. With hope in our hearts, we can and will prevail.
Hope is why I walk and it’s also why I advocate. Hope will be why I walk and advocate, until there is nothing to left to walk and advocate for.
Christopher Reeve said, “Once you choose hope, anything’s possible.”
I choose hope.
To learn more about Autism Votes, take action today on autism insurance reform legislation in your state, or find out about Autism Speaks’ federal legislative advocacy agenda, please visitwww.autismvotes.org
We recently received this e-mail from a parent:
My son was diagnosed with PDD-NOS at the age of two and a half. He’s had years of Skills Trainers and Autism Consultants who have helped him navigate his world. He’s fully mainstreamed in a public school here in Hawaii (he’s in the seventh grade) and is doing exceptionally well (scoring A’s in his Advanced Placement math, etc.) Although his autism diagnosis is his “Big Secret” which he shares with a very select group of people, his English teacher encouraged him to write about his struggles for his English paper (she promised she wouldn’t share it with the class). I wanted to share this story with the autism community because it can perhaps give others some perspective and inspiration with respect to their struggles.
Have you ever had a challenge that you had to overcome, but you did not want anybody to know about it? Hi, I am (name redacted), and I have been dealing with this challenge for as long as I ever lived. I was born with a disability called autism. Yes, I seem like I am functioning regularly in society, but appearances can actually be deceiving. I will explain later what autism is, how I dealt with this and what I have learned from this experience. Come and explore my deep secret of my life.
First, I will tell you the many things I experienced while I had autism. I sometimes had a hard time in school. I was disorganized and I also sometimes couldn’t focus when I was young. I had a hard childhood and this struggle for my “survival” was hard to overcome. I sometimes ask my mom, “Why me? Why did God choose me to lack what other people have?” I felt like I was an alien in school and was I thought I was very different from other people. I felt so discouraged that I ran away from home and ran as fast as I could. I brought clothes, a toothbrush and toothpaste, money to survive and I also wrote a note to tell my mom that I was leaving. I finally came home within four hours of running away from home.
In addition, I will tell you how I solved this dilemma. I try to think positive and try hard in making friends, which was hard for me to do. I was actually good at the academics, but I was (and am still) struggling with planning and applying my strategies to the real world. There were many people out there to help me and I do give them credit to all of their accomplishments. I tried to follow their advice and sometimes failed, but yes they did help me out. I also stay on a special diet so that I can concentrate more. I find it does help.
Next, I shall tell you what I learned from this experience. I learned that I am not an alien and am normal. In fact, I think that this is actually a good experience. I am more grateful to what I can do. I had things that I could not do that other people could do, but now I can do those things, which I do not take in vain. I also finally learned that I have the strength inside of me to overcome challenges. Now, when I do face challenges like this, I can know inside that “I AM AN OVERCOMER!”
Overall, I have reflected on this challenge and I feel good that I could face this challenge and almost beat it. However, I am still facing with this challenge of autism. So far, I am doing well and I think that I have gone farther than I have ever thought I could go. This is a message to all of you: whatever challenge you are facing, find the real problem and solve the real problem. Believe in yourself and have inner strength to fight the problem if it’s physically or mentally.
This “In Their Own Words” essay is written by a seventh grade student in Hawaii and was submitted by his mother.
“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.
High-school group’s goal to run Des Moines Marathon (Des Moines, Iowa)
Haifaa Meri doesn’t want to look like she does. “It is not me,” says the 17-year-old. Haifaa stayed thin by swimming when she lived in Egypt. But her parents split and dad moved to Lebanon. She quit swimming and instead worried about family matters. Read more.
Man With Autism Returns Home; CPD Cancels Alert (Colombus, Ohio)
Columbus police cancel an endangered missing adult alert Tuesday after a man with autism returns home safe. Read more.
Father accused of violently shaking son gives up parental rights, infant continues to struggle with injuries (Grand Rapids, Mich.)
An 11-month-old infant continues to struggle with the injuries he suffered following a violent shaking almost eight months ago, allegedly at the hands of his father. Read more.
Q&A With Temple Grandin (Food Safety News)
As part of our ongoing expert Q&A series, a conversation with world-renowned livestock expert Temple Grandin on humane handling, small vs. big, transparency, and the future of agriculture. Read more.
Brain Activity Predicts Autism (India)
In what could turn out to be a potential tool in the diagnosis of autism, scientists claim to have discovered that a person’s performance on autism test can be predicted from an EEG. Read more.
PS 37 in Great Kills wins title of ‘America’s Favorite School’ (Staten Island, N.Y.)
The Great Kills school prevailed in cyber-balloting, the results of which were announced this evening. The school community had been on tenterhooks since the contest ended last month. The $20,000 prize will enable the school, which serves children with various disabilities, including autism, to buy new therapy equipment. Read more.
A few months ago, the Family Services team received a call from a fourth grade teacher at PS 7 in Brooklyn. Through a “Penny Harvest,” her class had raised $900, $300 of which they decided as a group to donate to Autism Speaks. Last Tuesday, we traveled out to Brooklyn to visit their classroom and accept their generous donation in person.
“This is Nora and Ali from Autism Speaks!” Mrs. Pavane announced to the 100+ students in the auditorium. A little girl in the class walked up to the microphone to announce that she had helped her class choose Autism Speaks because her older brother is on the autism spectrum, and it would mean a lot to her family. We walked up and thanked her very much for thinking of us and sharing information about autism with her class.
“Does anyone know what autism is?” we asked at first. We got little to no response. We didn’t think reciting the DSM-IV criteria would really captivate the fourth grade crowd, so we decided to read the story “Since We’re Friends” so they could understand a bit about the issues faced by children with autism. The book conveyed to our audience that children with autism are just like them; they are fun and wonderful friends who might sometimes need a little bit of support. Much to our surprise, given our recollection of our attention spans at that age, the class seemed fascinated by the story. A boy and his friend with autism were swimming, playing baseball, running around and having fun! The only difference was the few times the boy needed to push his friend a little to make sure he was comfortable and calm. Through reading the story, what may have first sounded to them like a scary disease now came across as something that affects lots of kids. Kids just like them, who they can help, simply by being their friend.
By far the highlight of their morning came next. We decided to play a video filled with pictures and facts to help the class to see a little more about autism. We figured the shorter the video the better for this age group, so we chose a two-minute video often used at Autism Speaks events. We know the kids loved the pictures and were intrigued by the facts displayed, but we could really see their enthusiasm based on the loud claps and high voices coming from the audience while Alicia Keys “No One” played in the background of the video. They were up on their feet singing every word while watching our video. We think Mrs. Pavane learned during our video that all she needed was a little Alicia Keys playing in her math class to really get the group going during multiplication lessons!
At the end of the presentation, we took questions from the group. Hands flew up immediately when Mrs. Pavane asked who would like to ask us something about autism. Is autism contagious? Can you only get it when you’re a little kid? How can I help someone with autism? We were floored by how interested this group of 10-year-olds was in learning more about autism, and how much they wanted to help. We handed out Autism Speaks awareness bracelets, and smiled as the kids walked out wearing their puzzle pieces with pride, armed with a new understanding of autism. One young boy held back from the group as they walked out, and turned to us with a dollar bill: “Here is one dollar for autism.” That, in itself, proved what a wonderful morning it had been. All it took was a simple story and a music video to teach a group of 100 4th graders about autism, and to inspire them to help make a difference in the lives of kids with autism. Kids who are just like them.
This year, celebrate your birthday and raise money for Autism Speaks following these simple steps:
2. Visit the birthday cause page and follow the three simple steps.
3. By asking friends to donate to your “birthday age” (i.e. $30 if you are turning 30) in lieu of gifts, you can easily raise money for Autism Speaks!
Help us promote your birthday wish – send us a tweet @autismspeaks!
Have you raised money in a creative way for Autism Speaks? E-mail us at email@example.com and stay tuned for more creative fundraising tips to come!
Kosovo’s Autistic Children Suffer in Silence (Kosovo)
Only six people are officially registered as autistic in Kosovo and receiving some help. Out there, another 16,000 may be suffering in isolation from the same cruel disorder. Read more.
Bill mandating autism coverage passes N.Y. State Senate (Insurance Financial & Advisor)
A bill requiring that accident and health insurance policies cover the screening, diagnosis and treatment of autism spectrum disorder has moved forward in New York. Read more.
Moncton East MLA Chris Collins visited Arnold H. McLeod yesterday to award the grant (Times & Transcript)
Students at Arnold H. Mcleod Elementary School will play on some new and some improved playground equipment in the near future. Read more.
Help for special children with special gifts (Trinidad and Tobago)
The Strategic Learning and Special Education Institute, a private institution in Trincity which works with special needs children, will on Wednesday host a professional workshop with therapists from the DIR Floortime Institute in Maryland, United States. Read more.
Treatment methods for Autism Spectrum Disorders evolving (Brownsville, Texas)
Periodically questions have been sent by readers. Several people have asked about how to better assist their adult children with autism. The understanding of autism and how to treat the disability is changing every day. For a long time, Applied Behavioral Analysis (ABA) was the primary methodology used to treat autism. Today, the approaches on treating autism spectrum disorders (ASD) are changing. The problem is many of adults with autism did not have the opportunity to experience today’s treatments when they were younger. Read more.
Helping cope with autism (Press Democrat)
Sonoma State University psychology professor Lorna Catford counsels dozens of families each year about how to care for their children with autism. Read more.
Did you ever do something completely outrageous, if only just to satisfy your special needs child? It’s like a moment when you surrender to autism, and you can’t decide if that is good thing, a bad thing, or just a fact-of-life-on the spectrum autism thing.
That was me this past weekend.
I was trying to put a positive finish on an up-and-down weekend. I had cringed as Trevor struggled to follow instructions at the hockey clinic he attends. I beamed when he came off the ice smiling, proudly telling me how sweaty he was from the hard work. I took it like a kick in the gut when I asked Trevor what his friend from special needs camp might like to do on a play date and the answer began with “Well, I like garages and he likes traffic lights …”
Trevor does like garages. He classifies all houses by their garage doors, and he describes the doors by naming their color/window scheme, starting from the bottom up. There’s “brown-brown-brown-brown” and “white-white-white-glass” and “white-white-glass-white” (because the windows aren’t always in the top row. Who knew?)
There’s even “ficky glass” – his word for windows that aren’t square but rather are some fancy shape. Oh, and “T glass,” or windows with four panes instead of one.
Apparently our garage door – “white-white-white-white” – is the lowest of the garage low-rent district.
A week ago, when we were talking about garage doors (in an attempt to distract Trevor from his anxiety over the brutal traffic coming back from the Jersey shore), I happened to mention that ours was actually “white-white-GLASS-white,” which has much more status in the garage world. The windows had been painted over by some previous owner.
Ever since that moment he’d been asking me if we could scrape the paint and transform our garage. It was not a project I was enthusiastic about, for a number of reasons. Nevertheless, on Sunday I finally ran out of excuses.
The clincher came when Trevor agreed to go with me to the store to get the supplies. He NEVER agrees to go to the store, even if it’s to get him something.
I relented. I was ON BOARD. So what if it was 90 degrees and 1000% humidity and I would be scraping paint inside the unventilated garage with the door closed? (Did I mention the windows were painted on BOTH SIDES?) Darn it if I wasn’t going to win Dad of the Year, or die (likely from paint-chip inhalation) trying.
A few minutes into the job I realized how futile it was. The paint was stubbornly clinging to the windows. I had to keep shooing Trevor away from helping for fear he’d inhale some of what I was trying to block with my 99 cent painter’s mask.
Finally, I got a single pane cleared – on the outside. Dripping in sweat and covered in paint flakes, I decided that I would do the inside of that one window and stop. Then I’d let Trevor come up with a new name for the resulting garage scheme.
I moved inside the garage to do the other side. I shut the garage door and started scraping away. I got it about half done when I pushed a little too hard and the glass shattered. My heart sunk. My anger spiked.
I was angry to be soaked in sweat, inhaling God knows what, scraping stupid paint off a stupid garage door window because if my son was “normal” I wouldn’t be there. I was angrier still that I wouldn’t be able to deliver for him. I threw down my scraper and threw open the garage door – conveniently forgetting that in doing so I was raising the glass shards directly over my head. The glass came crashing down on me. I felt my scalp. My hand was covered in sweat, and more than a little blood. Luckily it was just a nick.
I went inside. For about the tenth time since I had started, Trevor asked if I was all done, and his look just broke my heart. It was as if an affirmative answer would have made everything all right, if only for a moment. I think as special needs parents, we are always trying to deliver those moments. Every once in a while we can reorder the world to suit our kids.
I told Trevor the bad news. I feared a meltdown. He took it well, but was disappointed. I went back outside to tape some cardboard over the shattered window, and then finally allowed him to see my work.
He looked it over and pronounced the result “okay”. We now have a “white-white-SHADY GLASS-white” garage. In the words of the Jeffersons, we’re “movin’ on up.”
I told this story to several co-workers Monday. They got it but they don’t GET it. And that’s okay, too. Maybe the next time they see a child with an “odd” interest or one melting down in public, they’ll think twice about their reaction. Maybe they’ll start noticing exactly how many different types of garage doors there are, too.
The silver linings are out there, they’re just sometimes, really, really, REALLY hard to see.
This “In Their Own Words” essay is written by Russ Levine, a father of two children, one who has autism.
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.
This is a guest post by Lorri Unumb, Autism Speaks senior policy advisor and counsel. Lorri also teaches “Autism and the Law” at the George Washington University Law School.
In the past three years, 20 states have passed laws requiring health insurance policies to cover individuals with autism and the treatments prescribed by doctors for autism. The New York legislature is on the verge of passing one of the broadest autism insurance reform bills in the nation, and yet some members of the autism community oppose the bill, largely because of its broadness. I write to offer some historical and legal perspective on a bill that embraces a broad approach to legislating.
I have been following New York’s autism legislation with great interest, not only because of my job as policy advisor with Autism Speaks but also because my son with severe autism has health insurance that is governed by New York law. I have a vested personal and professional interest in the legislation.
Further, I have a somewhat unique historical perspective, given my role in helping to spur the national movement toward autism insurance reform. In 2005, while I was a law professor, I wrote legislation in South Carolina to require health insurance coverage for autism. The bill broadly required that:
A health insurance plan as defined in this section must provide coverage for the treatment of autism spectrum disorder. Coverage provided under this section is limited to treatment that is prescribed by the insured’s treating medical doctor in accordance with a treatment plan.
The bill did not list the particular treatments that insurance must cover; rather, it required insurers to cover whatever the doctor prescribes, within reason. It contained language that protected the insurers from having to pay for treatments that were unnecessary, not evidence-based, provided by family members, and the like:
[T]he coverage required . . . may be subject to other general exclusions and limitations of the health insurance plan, including, but not limited to, coordination of benefits, participating provider requirements, restrictions on services provided by family or household members, utilization review of health care services including review of medical necessity, case management, and other managed care provisions.
This legislation passed in South Carolina in 2007, and since that time, children with autism have been receiving meaningful coverage for mainstream treatments prescribed by their doctors, including psychological care, speech therapy, occupational therapy, physical therapy, and the most commonly-prescribed treatment for autism, applied behavior analysis (ABA) therapy.
The South Carolina law is very similar to Indiana’s autism insurance statute, and individuals with autism in Indiana have likewise been receiving coverage under that state’s broadly written bill.
Since 2007, a number of states have passed autism insurance bills that do not embrace the broad approach; instead, they laundry-list the treatments that must be covered. A typical list from these states includes psychological care, psychiatric care, therapeutic care (OT, PT, ST), pharmacological care, and behavioral therapy (ABA). Also, most bills that have passed since 2007 contain significant limitations of coverage, such as a cap that limits spending on ABA therapy to $50,000 per year or an age cap that requires coverage only through age 21.
In 2009, there were pending in the New York legislature four different autism insurance bills, three of which contained a laundry-list of treatments to be covered. The lists varied considerably, and members of the autism community could not agree on how expansive the list should be. The bills also contained various age and dollar caps on coverage.
In October 2009, the Senate Insurance Committee conducted a hearing on all of the pending autism bills. The all-day hearing included testimony from dozens of witnesses and was extremely comprehensive.
After hearing testimony on the competing bills, the committee chair decided to craft his own bill, which returned to the broad approach of merely legislating coverage and leaving for another body (a regulatory body) the exact specifics of the coverage.
As a parent and a lawyer, I support this approach.
By necessity, legislators are generalists and should not be called upon to list the treatment options from which doctors may choose, or to weigh the evidence supporting one medical treatment against the evidence supporting another. It’s not their job. In the context of insurance legislation, their job is to broadly require coverage if they find coverage lacking and within the public interest.
Critics of this bill don’t like the broad approach. They want the certainty of a legislative laundry-list, as has been provided in numerous other states. However, critics fail to acknowledge that the New York autism community itself could not agree on the list and such disagreement is what led to the broad bill in the first place. I have worked with the autism community in almost all of the states that produced laundry-list-type bills and statutes, and never was there dissension within the community that would have required the legislature to choose among various lists.
Critics lodge several other complaints, too.
First, critics don’t like that the bill limits the insurers’ responsibility to covering treatments that are “evidence-based, peer-reviewed and clinically proven.” Critics say this tripartite standard creates an impossibly high threshold that no treatments will meet.
It is not uncommon for states to limit insurers’ responsibility to covering treatments that are “evidence-based,” which I believe is an appropriate limitation. Generally, premium-payers expect insurers to cover mainstream treatments but do not expect insurers to cover treatments that have not been empirically validated.
The issue in the New York bill is the addition of the terms “peer-reviewed” and “clinically proven.” The addition of these terms does not create a higher standard. To be “evidence-based,” a treatment must have been studied and those studies must be have been published in peer-reviewed journals. Thus, “evidence-based” subsumes “peer-reviewed.”
Similarly, “clinically proven” simply reinforces the concept of “evidence-based” treatment but does not set a higher standard of review.
Critics of the bill have yet to name a single autism treatment that would satisfy the traditional standard of “evidence-based” but would not satisfy the tripartite standard.
It seems that what the bill’s opponents really want is coverage for treatments that are not evidence-based. Certainly, there are many protocols that parents of children with autism try on their children that are lacking sufficient evidence of efficacy. I have used some of them with my own son, and I don’t question the intentions of other parents who do so. But I understand that insurers must draw the line somewhere, and “evidence-based” is where the line is traditionally drawn in health insurance.
The overall success of the autism insurance reform movement over the last three years stems largely from the fact that the autism community has not sought special treatment in insurance matters; we have sought equal treatment. All we have asked is that the mainstream treatments that our doctors prescribe for our medical condition be covered by insurance. To have continued success, we must be willing to limit the treatments for which we seek coverage to those that are evidence-based.
Opponents of the autism bill also criticize “the establishment of a four agency committee . . . to pick out whatever ‘science’ they believe in.” Actually, the bill does not establish a four-agency committee. It simply directs the Commissioner of Health to promulgate regulations (a standard practice following new legislation) and directs the Commissioner to consult with three other relevant agencies in the process. In a field where families and services often suffer because one agency never knows what another agency is doing, it is refreshing to see a collaborative process established from the outset.
Further, I am puzzled by the fear of having the Department of Health determine what treatments must be covered. The opponents wish to have a legislative body (generalists) determine a list of treatments that must be covered, but they fear a regulatory body (health specialists) doing the same?
Finally, opponents of the bill apparently fear losing coverage that currently exists under their health insurance policies or failing to obtain coverage for services like anesthesiological and endocrinological care. S.7000B/A.10372A specifies that it “shall not be construed as limiting the benefits that are otherwise available to an individual under the policy.” As such, if anesthesia is generally covered under a policy, it will still be covered without regard to the list of treatments that the Commissioner of Health develops.
Proponents of S.7000B/A.10372A, who are also parents of children with autism, do not wish to limit the treatments that any family affected by autism wishes to use with their children. Nor do we wish to narrowly restrict what doctors may prescribe for their patients. Rather, we wish to support a bill that is likely to pass – a bill with reasonable limitations that are fair to all parties. Proponents see advantages to broadly-written bills like S.7000B/A.10372A, even for those wishing to include treatments outside the mainstream. For instance, if new treatments emerge, or existing treatments go through the rigors of becoming evidence-based, these can be added through the regulatory process to the list of treatments that must be covered without the need for going back to the legislature to amend the law.
The New York autism bill is good policy. It covers individuals with autism of all ages. It does not impose artificial dollar caps on treatments, as many other states’ autism laws do. It asks the legislative and regulatory systems to operate together, as they were designed to do. And it will offer much-needed relief to individuals with autism and their families, as citizens in 21 other states are now receiving.
U. of Utah receives CDC grant (Salt Lake City, Utah)
The University of Utah is receiving a big grant from the Centers for Disease Control and Prevention. The $2.4 million, four-year grant is for the study of autism spectrum disorders and other developmental disabilities. The school is one of 11 national centers awarded a total of $5 million in grants from the CDC for the studies. Read more.
Balham Mums stage Art Exhibition (BalhamPeople)
Two mums from Tooting, whose children go to Ravenstone Primary School in Balham are using their own personal and highly evocative experiences of Autism and Aspergers syndrome with amazing consequences. Read more.
Actors’ disabilities don’t detract from their stage presence (The Gazette)
Stephen Snow may not yet be a household name, but he is a pioneer in the world of theatre. He has proven over the years that people afflicted with an array of developmental and physical disabilities can still exhibit astonishing performing abilities. Read more.
Horse power propels therapy at Morning Dove (Zionsville, Indiana)
Through the help of Morning Dove Therapeutic Riding in Zionsville, 7-year-old Aidan Fitzpatrick can feel what it would be like to walk. Aidan, who has cerebral palsy, is part of a program called hippo therapy. Hippo is the Greek word for horse. Read more.
Cool Kid reaches out to help disabled students (Los Angeles, Calif.)
Best Buddies is a program that pairs students with intellectual and developmental disabilities in one-to-one friendships with other high school students. Cool Kid Jaclyn Valdez participates in the program, helping her buddy Brooke, but she also wants other students to get more involved with their other classmates. Read more.