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Grandma’s Recipe for Advocacy Success

July 23, 2010 3 comments

Autism Speaks' staffer, Jennifer Smith, with a puzzle piece cookie

Every Christmas season when I was little, my grandmother would make a huge batch of cookies and mail off a box to each of the grandkids.  We would rip open the containers and look at all the pretty little cookies that were layered through it. She used the same basic dough to make each cookie, but they were all decorated differently and came in a variety of shapes, sizes, flavors and colors.

When I am talking to Autism Speaks volunteers throughout the country who are working tirelessly on autism insurance reform legislation, I often think about my grandmother’s cookies when I refer to our grassroots advocacy approach as our sugar cookie recipe.  This is because, whether we are advocating for autism insurance reform legislation in the Kentucky State Senate, the New York State Assembly, or the United States House of Representatives, the “recipe” to move from an idea, to a bill, to an enacted law remains the same.

Like my grandmother’s cookies, the Autism Speaks Government Relations Team, in partnership with our Chapter Advocacy Chairs (CACs), families, and a network of other “on the ground” individuals and advocacy organizations begins with a basic recipe for success that we then decorate differently and bake into a variety of shapes, sizes, flavors, and colors.  Like the cookies, no two autism insurance reform bills look exactly alike.  The basic recipe is the same, but certain ingredients are tweaked, added, or removed according to the specific circumstances in the state.

Grandma’s Cookie Recipe for Advocacy Success:

Ingredients -

  • 2 cups of all-purpose flour – This is our grassroots.  We need twice as many as you would need to give it all of their purpose to make these bills become laws.
  • 1 stick of butter – This is our internal direction or lobbyists.  We need the real thing, not an oily substitute, to help us grease the skids.
  • 1 cup of sugar – This is our policy.  It sweetens our cookies and keeps us coming back for more as that policy reforms the lives of children with autism across the United States.
  • a pinch of salt – This is our champion or the political leadership of a state, those who are worth their salt and have the fortitude to stand up for our children.
  • 2 eggs – This is our unity and focus with the autism community.  It is a binding ingredient that pulls all of the other ingredients together into delicious dough.

Directions – Stay tuned!

For nearly three years, Autism Speaks has focused its state legislative agenda on autism insurance reform.  To date twenty-three states have passed legislation that will bring insurance reform to thousands of families coping with the financial struggles of autism.  Over the past few months, we have published several blog posts written by our CACs and chronicling the journey in their state from idea, to bill, to enacted law.  Our CACs, with their strong leadership skills, their ability to build bridges with others in their communities, their political savvy and policy knowhow are a key ingredient in our cookie recipe for success.  They are our flour.  Over the next few weeks, we would like to show you some great examples of the other ingredients in our recipe for advocacy success and directions for how these ingredients combine to successfully enact a state autism insurance reform law.  A grassroots baking lesson of sorts.

At Autism Speaks, our goal is straightforward.  We want to achieve as many benefits for insurance coverage for as many individuals with autism as possible for as long as possible while working within the parameters of existing law and the political environment of each individual state.  There are still 27 states that have yet to enact autism insurance reform legislation.  Additionally, reform is necessary at the federal level to ensure that all individuals with autism across the country, from infant to adult, have appropriate health insurance coverage for medically necessary, evidence-based autism treatments, therapies, and care.  What ingredients are still missing?  How do we add them into the batter so that everyone can eat?

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 visit www.autismvotes.org


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Autism in the News – 07.23.10

July 23, 2010 1 comment

Dewey Beach Lions Clubhouse to be used for culinary training (Cape Gazette)
The kitchen in the new Dewey Beach Lions Club Community Center on McKinley Ave. will be used, in part, by Chimes Inc. to train people with cognitive disabilities in kitchen skills and culinary arts. Read more.

Parents finding benefit in teaching babies sign language as well as speech (KansasCity.com)
Toward the end of lunch, Phoenix Ferragame, 17 months old, raised both hands in front of his chest and tapped his fingertips together. Read more.

Marathon men make it 21 in a row (Ireland)
It’s a mammoth task for any long distance runner – 32 marathons in 32 days across 32 counties. Read more.

Stem cell aid sought for autistic son (Ottawa)
She’s a desperate parent, and she’s running out of options. Read more.

Special needs unit at Malmesbury Primary School could be saved in U-turn (UK)
Parents battling to save the special needs unit at Malmesbury Primary School from closing have expressed their delight after Wiltshire Council revealed that plans could be reversed in a dramatic U-turn. Read more.

In Their Own Words – Our Time of Hope

July 22, 2010 18 comments

This “In Their Own Words” is written by  Matthew Asner, a film and television producer. He has a son with autism and has dedicated himself to working with charitable organizations such as Autism Speaks and fighting for the rights of those with special needs and in special education with his organization, Save Special Education. Asner was nominated for GQ’s The Better Men Better World Search. If he wins the competition, Autism Speaks will receive $10,000.

“We must accept finite disappointment, but we must never lose infinite hope.”
- Dr. Martin Luther King Jr.

I begin and end this post with quotes about hope. It is hope that drives me. It is hope that brings life to every second of my day. With so much hardship around us these days, hope is in short supply. We need our friends and neighbors now more than ever.

Four years ago my son was diagnosed with autism. Of course, this was devastating to me and my wife. I have a brother with autism and I had seen the constant struggle by my father and his wife to make sure my brother had consistent and appropriate help. I knew firsthand that the diagnosis of autism meant that raising my son would require a different, more demanding manner of care than that of his older, typical brother. But, when one of my son’s doctors told me that she didn’t believe he would be able to care for himself in the future and that we should make arrangements for his care, it was as if a gun went off in the examination room – BANG! She had just killed my hope. Murdered it in cold blood.

I walked to my car and sat for a while. I was close to tears and I knew my wife was crying in her car. A horrible thought came into my head. Why couldn’t she have told me he had cancer? At least then we would have a fighting chance. I walked around in a hopeless cloud for a year or so.

After attending my first Walk Now for Autism Speaks event, I realized that there were a world of people who wanted to feel the same way that I wanted to feel. My hope had been restored. The Walks made me a believer in the phrase “there is safety in numbers.” This is when I began to get involved with the special needs community.

As invigorating and empowering as those Walk days are, unfortunately, in daily life the autism community is fractured. Race, class, disability and, most of all, fatigue fracture us. All of this makes it difficult to come together and stand as one. At an Autism Speaks Walk, we stand as one. The time has come for us to do this every day.

As you all know, our economy is in terrible shape. As a result, the special needs community has seen programs slashed or eradicated completely, making it increasingly more difficult for families to deal with the additional stress. In these trying times, it is imperative for us to come together as a group.

Next time you are at a Walk, look around you. There will probably be 10,000 to 20,000 people there. We are an important voice. We are a passionate, strong group. And I hope being together makes you feel the same way it makes me feel. When I am at a Walk and I talk to people and take part in this energizing union of people with at least one common issue, I feel motivated. I feel power. Most of all, I feel hope.

It is up to us to take what we feel on those Walk days and incorporate it into our daily lives. If we are truly going to change the world and make it a better place for our children, we have to do it together. We have to join groups, and write to and demand representation from our elected officials, school superintendents and school boards. We have to know our rights and fight for what we are legally entitled to when we go into IEP meetings. We must find ways to be less intimidated by the process.

This can be our time – a time where we all come together and stand for the rights of our children and our rights as parents of a child living with autism. If we are alone, we are without hope. Together, we can change the world and make hope live.

“Hope is the companion of power, and mother of success; for who so hopes strongly has within him the gift of miracles.”
- Samuel Smiles

“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 editors@autismspeaks.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.


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Autism in the News – 07.22.10

More Funding Needed for Early Intervention Programs for Children (TopNews)
There is a requirement of more financial support for early intervention programs for children up to 12 years of age, shared Professor Louise Newman, who is the convener of the Children’s Mental Health Coalition. The national debate into support for people with mental illnesses still persists. Read more.

Newman YMCA to celebrate 30 years as a community resource (Seekonk, R.I.)
Her face lights up when she talks about the YMCA. That shouldn’t come as a surprise. As executive director of the Taunton Avenue facility it is Jeanine Achin’s job to be enthusiastic. But there’s something more. Sitting in one of two matching, retro leather chairs in her modest office, Ms. Achin is excited not only about the Newman (which is part of the YMCA of Greater Providence) and what it brings to the community, but its future as a resource for residents of every age. Read more.

Another Class Action Filed Against Blue Cross Blue Shield of Michigan Over Its Refusal To Pay for Applied Behavior Analysis Therapy for Autistic Children (Detroit, Mich.) – NEWS RELEASE
A school teacher is the latest person to sue Blue Cross for refusing to authorize payment for applied behavior analysis (ABA) treatment for children with autism. Karen Barkowska filed a class action today in Wayne County Circuit Court against Blue Cross Blue Shield of Michigan, and its educational arm, Michigan Education Special Services Association (MESSA), over its characterization of ABA therapy as “experimental.” Read more.

Fairfield students raise $9,000 for Autism Speaks (Cinncinnati.com)
Autism Speaks is $9,000 richer thanks to the contributions of students at Fairfield Intermediate School. Read more.

Doris Buffett: One Woman Can Make a Difference (The Free Press)
On one day in 1987, a day that became known as Black Monday, Doris Buffet went from having $10 million to being $2 million in debt. Read more.

32 Flavors

July 22, 2010 5 comments

This is a post by Autism Speaks’ Assistant Director of Science Communication and Special Projects Leanne Chukoskie, Ph.D.

I have always been a big fan of ice cream, however I used to find the parlors that offered 32 flavors to be somewhat overwhelming. My experience while on summer vacation with my nephew, who has a severe egg allergy, makes me grateful for the many options. I’m especially grateful when the employees take our request seriously and indicate which flavors have absolutely not come in contact with egg. Soft serve vanilla appears to be a safe bet in most places but I am sad at his only and somewhat uninteresting option when other kids get to order flavors sounds like they have leaped from the pages of a Roald Dahl story, like Birthday Cake, Cotton Candy, or Moose Tracks.

Flavors and variety was a theme of this trip. The main event of the vacation was a party, the kind of classic summery party I hold in memories of my youth with ample quantities of delicious summer salads, chicken, grilled hot dogs, fruit, fudge and (of course) ice cream. The children romped about the yard, and adults relaxed in the shade, catching up with each other over cold drinks. The reason for the event was my niece’s 4th birthday, but that was merely an excuse for the large cadre of family and friends to gather and enjoy the day.

In addition to the chatter with uncles, aunts and family friends, I stole some time to watch the kids’ interactions. At least three of the 30 plus children attending were diagnosed with an ASD, including my nephew. How were they managing in this melee? Any signs of sensory overload? Anyone feeling excluded from the fun?

When my sister-in-law called the group to engage in assorted of games and activities some children came running immediately. Others in this small tribe looked to each other for cues. Is the game worth joining or would it be better to continue playing in the treehouse?. With multiple flavors of activity to entertain all kids, some children elected to continue their current play in the sprinkler or with the racetrack. This was perfectly acceptable. Especially since the kids playing separately were not alone, and they were not necessarily the children on the spectrum. This was intriguing to me because for the most part, these children did not know each other so the playmates and their individual mannerisms were all new, and not necessarily comfortable.

Children’s contentedness, much like ice cream and also autism, comes in many flavors. All flavors were welcome at this party, of course, but some aspects of the party may have inadvertently favored some over others. One of the “older” boys was quite literally outraged by the party rule that children 6 and older could take only 5 items from the piñata (lest nothing be left for the younger, presumably less effective gathers). Righteous indignation lasted for a good hour, fuming as he watched multiple 4 and 5 year olds carrying more loot than could be held in a small bag, much less enjoyed in a day. I also watched as someone else—another child—offered comfort and agreement that the rule was unjust and should be changed next time.

The child-initiated inclusion, acceptance, and comfort I saw at the party reminded me of a promising peer-based therapy. Connie Kasari, Ph.D. (UCLA) and colleagues have demonstrated the effectiveness of peer-intervention to bring children with ASD into more social interactions on the playground (see more here). The children with ASD in these studies as well as those at the party were in mainstream schools. In considering this and in a broader context “party therapy” for all the kids attending, I thought about how a child with more severe communication and medical challenges would respond to the environment of this party. The many choices of things to do and the sensory riot could be escaped, but with the escape so too would go social interaction. Any therapy or interaction directed at improving social communication is less likely to succeed when other behavioral or medical challenges interfere with learning. Such is also the case when not “therapy” but merely play is the desire of the day.

Autism Speaks has established in its strategic plan for science a specific goal to develop ways to rigorously identify meaningful subtypes of ASDs that predict response to various types of treatment. Our ability to quickly identify the various “flavors” of ASD will speed effective treatments for the affected child.

Having choices is only useful if you know how good each choice is likely to be. The trick with ice cream is easy—simply request a sample of whatever you are considering. With autism therapies, there is no simple trick in choosing, but hope lies in identifying subtypes or “flavors” of ASD so we can match these with the most effective therapies, tailored for that subtype. Much as the list of ingredients that was essential to select the right ice cream for my nephew, the research we support aims to develop the profile of symptoms that results in the best outcome for each type of therapy. By combining research on treating different subtypes with a focus on developing new therapies for subtypes that have yet to have good outcomes we seek the knowledge to allow us to tailor treatment plans to suit each individual’s unique needs, for each and every flavor of ASD.

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Good “Karma” for Autism Speaks

July 21, 2010 1 comment

The August 2010 issue of Redbook gives a shout-out to Autism Speaks and an awesome app you can download to support us while you shop – CauseWorld. If you have an iPhone or Android, download CauseWorld and start earning “karmas,” which turn into donations. Check it out and tell us what you think.

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Autism in the News – 07.21.10

School for children with Asperger’s syndrome will not open in September (Canada)
Though their plans to open a midtown Toronto school for children with Asperger syndrome have been put on hold, moms Margot Nelles and Wanda Bogris are determined to make it work. The duo had hoped to open the Black Oak Academy, which would cater to students with Asperger’s from Grades 1 to 8, at Yonge Street and Eglinton Avenue in September. Read more.

Equine therapy and autism: Horsing around brings out the best (UK)
The last time my brother Ashley and I went riding together was in 1991 (he’s now 30 and I’m 28). He can tell you the exact date; I can tell you the name of the horse (Snoopy, on account of its markings). That tells you a lot about our respective modes of thinking. Read more.

Speaker provides inspiration for those affected by autism (Austin Daily Herald)
When Austin’s Haylie Bawek was younger, she struggled with simple math- like 1+1=2- on paper. But if you gave her something to visualize, such as adding one apple to another, she could solve the equation much more easily. Read more.

Reaching full potential (Amherst Daily News)
Since Emily Mazur was diagnosed with autism in 2008, her family has been in close contact with the Cumberland Early Intervention Program. Read more.

Irish fitness guru runs 32 marathons in 32 days (IrishCentral)
A Dublin fitness guru by day, DJ by night,  Gerry Duffy is doing what few would believe to be possible: running 32 marathons in 32 days – all in the name of charity. Read more.

Katy Plans Skydive to Raise Funds for Sister’s Special Needs School (Scotland)
Katy Wood, who has cerebral palsy, is planning to jump out of a plane early next month to raise money for her sister’s school. Read more.

Autism in the News – 07.20.10

Teachers overwhelmed by special needs (Australia)
One in 10 students in NSW public schools are disabled or have special learning needs and teachers are struggling to educate them, to the detriment of other pupils, an inquiry has heard. Read more.

Firm Withdraws Contract Due to Parents’ Complaints (The Caldwells Patch)
The Caldwell-West Caldwell School District’s superintendent and Board of Education heard loud and clear in a meeting last month the concerns parents of special education students had regarding the proposed vendors for occupational and physical therapy services. Read more.

Voice Recorders Seem to Help Detect Autism (U.S. News)
An analysis of soundtracks from a recording system worn by young children might detect differences in vocalization and help researchers identify those children who may have autism or language delays, a new study suggests. Read more.

A passion for antiques: Dartmouth teen thrives despite Asperger’s (Dartmouth, Mass.)
Some parents might be stressing over what their teens are going to do with their lives, but Regina and Mark Durant have no doubt their son, Abraham, will go into the antiques business. Read more.
 
With the greatest of ease (Asheland, Ore.)
They flip and twirl on silk ropes, dance on big beach balls, jump rope on unicycles, swoop on trapezes and, above all, have tons of fun while on a steep learning curve. Read more.
 
Family’s dream coming true (Canada)
Erica and Travis Barton say they can’t believe their dream of owning a home is becoming a reality. Read more.
 
They just can’t stand it (charlotteobserver.com)
It’s unbearable to wear clothing with tags. It’s impossible to use scissors, no matter how many times you try. All mushy or soft foods are unbearable – not because of the flavor, but the consistency. Read more.
The one-two punch of autism (Westchester, N.Y.)
“Your child has autism.” It’s a devastating diagnosis for a parent to hear. But it’s a one-two punch when your insurance company then refuses to cover the critical, medically necessary therapies your child desperately needs. Read more.

In Their Own Words – What Not to Wear, Autism Style

July 20, 2010 45 comments

This “In Their Own Words” essay is by Laura Shumaker. Laura is the author of “A REGULAR GUY: GROWING UP WITH AUTISM.” Join the discussion about her book on Facebook.

It was 103 degrees, the hottest July 3 on record for our community in Northern California. My son Matthew, who is 24 years old and has autism, was getting ready to go the local saloon with his younger brother Andy to sing karaoke, one of his favorite activities.

“I’m ready,” he said, and as I turned to say goodbye, Matthew stood before me in a long sleeve winter wool plaid shirt, khaki pants and dress shoes.

To top off the look, he had cut his bangs too short and tried to hide the botch job with a comb over. He had patches of toilet paper soaked in blood all over his face from shaving.

He was beaming.

“Matthew,” I said, “you really should change into something cooler. It’s really hot … ”

“I look good!” he argued.  “”I’ve been planning on wearing these clothes all week!”

He did look pretty good, at least better than his standard shorts, t-shirt, dark socks and sandals.

Andy shrugged with resignation in the back ground, but insisted that Matthew clean up the shaving cuts before they left.

I asked parents on my  Facebook page to tell me which battles they’ve given up fighting. Most, as you can imagine, had a hard time picking just one.

I have struggled for years over Matthew’s clothing choices and grooming routine. Thankfully, he’s embraced the idea of the importance of physical hygiene (though a little obsessed with a close shave) but the clothing battle is one I’d given up on. As Matthew walked out the door that night, it occurred to me that it was time to help him work on his image. He was, after all, looking to meet some nice girls. He was going to need all the help he could get. The challenge would be finding a way to get the message across without lecturing him.

An idea came to me.

I got the Halloween box out of the attic and fished out some cheap wigs that we’d collected over the years. I convinced Andy to help me put together some “regular” outfits and some oddball outfits enhanced by a Sony Bono mullet and the Morticia wig.

“We’ll make it a game!” I told Andy, “We’ll ask him to pick the outfit that looks the craziest and the one that looks the most regular. “

“You realize this is going to backfire,” said Andy, “and that he’ll want to start wearing the wigs around.”

And of course that is exactly what happened.

So I’m backing off again. You have to hand it to me for trying. The good news is that Matthew and his social skills counselor are going people watching today at the mall. (Her idea, not mine)

Maybe he’ll get some fashion tips there.

“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 editors@autismspeaks.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.

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The Day Joey Testified Before Congress

July 19, 2010 30 comments

This is a guest post by Sharon Rosenbloom. Sharon is a speech and language Pathologist, autism consultant, and author of the award winning book: Souls: Beneath and Beyond Autism. She is the mother of Joey Rosenbloom, a 22 year old with autism. Sharon and Joey, along with their family members Raia and Bob, are passionate advocates for individuals living with autism – especially those with limited access to communication.

On July 15, my son Joey climbed the steps of the Russell Senate Office Building on Capitol Hill, Washington, D.C. Watching him, it struck me that for a person with autism; this was not so much “The Hill” as yet another mountain to be climbed. To the casual observer, those steps looked deceptively easy.  But for Joey, a 22-year-old man with autism, the journey that brought him to Washington, D.C. with the honor of testifying as part of the Advancing Futures for Adults with Autism Congressional Briefing had been a long and arduous one. This was never more evident than as he ascended those steps. Only those of us who live in the world of autism can imagine the amount of effort it took for Joey to simply wear a suit, let alone develop the skills to access a voice, manage crippling anxiety and transcend the abyss from autism to the steps of this historical government building.

As both Joey’s anchor and rudder, I begged my eyes to stay dry and my heart to stop racing, in order to be the calm presence he needed as he viewed this audience of influence seated before him in The Kennedy Caucus Room. On every level of our senses, each of us at that table knew the importance of this unprecedented event: here sat the faces of adults with autism, each one representing a story of relentless effort and unwavering hope. Finally, beyond the statistics and symptoms, those given the label of autism were truly going to speak. I knew all too well that each panelist with autism had spent their entire life being judged for what the textbooks called “idiosyncratic” behaviors. Yet on this day, these remarkable individuals were being given an opportunity to represent the truth about what adults living with autism have the potential to be, and how the ceaseless love and energy poured onto them yielded extraordinary returns on that investment. As Joey fidgeted with the microphone, I was filled with profound respect for him that dropped a blanket of calm over the sharp edges of my apprehension. Overwhelmed by emotion, I took Joey’s hand, and he let me hold it. I found myself replacing that familiar anticipation of stinging public scrutiny with a prayer that those watching might see each panelist with the eyes of their hearts, listen with their minds wide open and ready themselves for paradigms to shift.

As the last thought was shared and the audience rose to their feet, filling the room with applause, I caught a glimpse of something I had never seen: pride, spreading like a smile across my son’s face. It was then I knew I had witnessed a milestone event which had lit a small candle of hope for Joey, and for all those labeled with autism: that by the miracle of human connection they might now be viewed, if for only those brief moments, through a truer lens.

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