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Tough Cookie

August 31, 2010 Leave a comment

This post is written by Shelley Hendrix, Autism Speaks’ Director of State Advocacy Relations. She currently resides in Baton Rouge, La. with her two children, Liam and Mairin. Liam was diagnosed with autism age the age of two in 1998. She began advocating on behalf of her son and other children with autism almost from day one.

Passing autism insurance reform legislation has been one tough cookie indeed!

In 2007, when Autism Speaks launched the Autism Votes program and Government Relations Department, three states had meaningful insurance coverage for children with autism.  Today, three years later, our community has enacted legislation in 20 more states in an unprecedented wave of reform across the United States. It has been three tough years and we still have a long way to go to achieve reform for meaningful health insurance coverage for every person with autism in our country, but we are well on our way!

In both our Federal and State-based legislative initiatives, Autism Speaks uses a specific formula – our “cookie recipe.” My last couple of blogs has focused on each of the ingredients in our recipe – why we need them, what purpose they serve and how they should be blended together.  Flour represents our grassroots effort.  Eggs represent unity and focus of our community.  Butter which represents professional lobbyist assistance. A pinch of salt represents the bill’s legislative champion and sugar represents the policy.  Each state’s “cookie,” their autism insurance reform initiative, is shaped, flavored and decorated differently once we bake them but by following the cookie dough recipe we have a tasty treat in the end for people to enjoy.

We made our dough and it is chilling in the refrigerator while we get out the cookie cutters, the rolling pin and the sprinkles to decorate the cookies. Passing a good bill, that achieves our number one goal of the highest coverage for the most children, is our aim.  Politics is the ultimate art of negotiation – start high and work down through all interested parties – the parents, the children, the community as a whole, the legislators and the executive branch – to roll out a bill that the parties can agree to and – here is the key word – enforce.

Cookie dough is just cookie dough until you bake it. Similarly, a bill is just a bill – words on paper that might read well but have no true impact – until it becomes a law and actually affects change.

Before we roll out that dough, we preheat our ovens and begin to make visits in the off season to legislators.  We start a buzz that heats up our issue long before we put the dough in the oven.  We sprinkle out a little more flour on our countertops and start rolling our dough to shape it for each state.  We lay the cut out cookies on the sheet and sprinkle them with the final touches. We always make sure to put on our oven mitts so we don’t burn our hands.

As the cookies begin to bake, they start to smell great.  We can almost taste them.  But we can’t take them out too early or we will just have hot dough!  We can’t leave them in too long or they will burn up, be inedible and we will have to start over.  We have to put them in and check on them throughout the process to make sure we have baked the best cookie that we can bake.

Do you live in a state that doesn’t have “cookies” yet?  Are you drooling to have some?  We could always use more flour!  Get involved.  We make things easy for you to get scooped up at Autism Votes.  We send you easy action alerts to follow so you know just what to do, how to act and when to act.  We even provide scripts to help you make your phone calls and send e-mails.

We need more help at every level so if you have ever had someone say to you, “I wish we could help you and your family!” here is a low-cost, high yield way that they can do just that.  Ask your family members, co-workers, therapists, teachers, neighbors and friends to sign up at www.autismvotes.org this week.

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.

Autism in the News – 08.31.10

August 31, 2010 Leave a comment

Autism in the Spotlight (Newsweek)
Health and celebrities are an intoxicating mix. Major disease organizations chronically search for famous faces to represent them—and for good reason. Celebs make a difference. Read more.

A place where sibs of special needs kids can open up (Staten Island, N.Y.)
Don Meyer says siblings of children on the autism spectrum face the same issues and emotions as their parents’, that the two experiences of living with someone with special needs parallel each other, with two major exceptions: Read more.

Donation grants teacher wishes (The Daily Journal)
Many of Valerie Kuhner’s students are visual learners, which led her to the idea of creating instructional videos. There was just one problem: Kuhner couldn’t afford a video camera. Kuhner turned to DonorsChoose.org, a website that allows teachers to post project proposals which donors can then choose to give money toward. She had given up hope since donations weren’t coming through until yesterday morning. Read more.

Success of Grandin film stirs hope in autism community (thecoloradoan)
A raft of Emmys for an HBO movie about Temple Grandin has heartened advocates for autism awareness, who say the CSU professor’s example gives parents hope their autistic children won’t be condemned to a life in the shadows. Read more.

Disabled kids boost life skills with fire service (UK)
Disabled youngsters joined other teens from across Doncaster for a wet and wild firefighting course which could be completed even in their wheelchairs. Read more.

HBO’s “Temple Grandin” Wins Seven Emmy Awards

August 30, 2010 16 comments

Congratulations to everyone who was involved in the creation and production of HBO’s “Temple Grandin,” which won seven Emmy Awards, including Outstanding Made for TV Movie and Outstanding Actress in a Miniseries or Movie. Special recognition goes to executive producers Emily Gerson Saines, Gil Bellows, and Anthony Edwards, who are supporters of Autism Speaks.

Check out the acceptance speech here and watch Temple Grandin on the red carpet here.

“Temple Grandin” is currently airing on HBO and the DVD is available for purchase.

View the movie trailer here and check out PopWatch on EW.com: “Temple Grandin” wins big at Emmys. But who is she?

Additional congratulations to our good friend and supporter, Tom Colicchio, whose program “Top Chef” was honored with an Emmy Award for Outstanding Reality – Competition Program.

Innovative Technologies Help Identify Patterns and Reveal Solutions in Autism

August 30, 2010 3 comments

A recent study reports that a quick brain scan could be used to screen for autism.  The study, from senior author Declan Murphy, Ph.D., of Kings’ College London, has garnered considerable attention from the media for its potential to change the way we identify autism spectrum disorders (ASD).  There is, however, another interesting aspect to this story. The investigators borrowed methods from a field of computer science and engineering called machine learning.  These tools are most effective in finding patterns in sets of data that are large and heterogeneous for use in classification.  Using a set of five measurements that are based on structural features of the human brain, the authors found that different patterns emerged for adults with autism when compared with typically-developing adults and also adults with ADHD.  Importantly, no single brain region or feature alone was able to discriminate between the groups.  When considered together, however, these features were selective approximately 90% of the time.

Machine learning techniques are also being used to classify symptoms in the hope of identifying meaningful subtypes of autism that can lead to tailored effective treatments.  Curtis Jensen, a computer science engineer in San Diego has applied these techniques to the ARI database of symptoms from over 40,000 parent surveys. to identify symptom clusters that suggest possible relationships between symptoms that may be useful for identifying subtypes of autism.  According to Jensen, the clusters “make sense”.  For example, those subjects that score high in the fear or anxiety clusters tend to have lower intellectual disability. Similarly, although challenges with language communication are a defining feature of ASD, the obsessive-compulsive cluster seems to experience the least language difficulty.

Machine learning methods are not alone among the computer science tools used to benefit autism. For many years, the Interactive Technology for Autism (ITA) initiative from Autism Speaks, brought together researchers with expertise in computer science and engineering to seek solutions to problems faced in autism.  Now, through a $10 million initiative from the National Science Foundation, researchers will combine computer vision, speech analysis and wireless physiological measurements to assist with early diagnosis and behavioral shaping.  Collaborators at Georgia Tech, Carnegie Mellon University, University of Illinois at Urbana-Champaign, the University of Southern California and the Massachusetts Institute of Technology (MIT), will be aiming these powerful tools at social engagement and other behaviors.  By analyzing video collected in clinic visits, at schools and also at home, the group hopes to develop tools for screening autism and evaluating the effects of therapy.

Several of the principal investigators involved in the recently awarded NSF grant are long standing members of the ITA steering committee. According to ITA co-chair and Associate Director of the NSF grant, “Organizations like Autism Speaks play a vital role in funding pilot investigations needed to demonstrate scientific feasibility of innovative approaches that lead to larger-scale, federally-sponsored research programs”. Stay tuned as we learn more from the new field of Computational Behavioral Science.

Autism in the News – Monday, 08.30.10

August 30, 2010 1 comment

In With the In Crowd (The Tablet)As I write this, kids are going back to school almost everywhere but in New York City. The first day of school isn’t until September 8 here, and thanks to Rosh Hashanah, our second day isn’t until September 13. I think our last day of school this year will be around Tisha B’Av. Read more.

2010 Emmy Winners List: Temple Grandin And Glee Rule The Night (Current Movie Reviews)
The 2010 Emmy Awards brought autism to the spotlight with Temple Grandin winning 5 awards and gave the hit TV series Glee some bragging rights with two. Temple Grandin is a HBO movie that shows how autism can be overcome. The story of Temple is truly an inspirational one and HBO did a great job with the movie. Read more.

Weston mom works to overcome obstacles of childhood conditions (Weston, Wis.)
Melissa Mittelsteadt considers herself a modern mom who wears many hats. One hat, however, took a little longer to grow into. Read more.

Brain’s default mode network may hold key to better psychiatric diagnoses (Los Angeles Times)
A series of studies published in recent years suggests that in people with depression, autism, schizophrenia and post-traumatic stress disorder, the default mode network, that curious pattern of brain activity that ramps up when we daydream, works differently than it does in healthy control subjects. Read more.

Exercise programs geared for autism (Chicago Daily Herald)
The Fox Valley Special Recreation Association will offer exercise programs to youths and adults with autism spectrum disorders beginning Wednesday, Sept. 1. Read more.

In Their Own Words – Does He Rule the House?

August 29, 2010 52 comments

This “In Their Own Words” is by Becki Becker, who has a 17-year-old son with autism. He was diagnosed at two and a half. You can read more of Becki’s writing on her blog, TheOtherSideofNormal.

I overheard a comment by a family member last weekend. He commented that Tony ruled the house – and that we all tip-toed around him.

It’s so true.

I didn’t realize how evident that was until last weekend.  It’s so “normal” for us that we don’t even notice it anymore.  But last weekend we were staying at my parents’ house and it really became apparent. Tony has certain “rules” that we’ve all just become accustomed to.  We’ve all adjusted because he can’t.  It’s not easy and it makes for a very tense environment sometimes.  Here’s what I noticed:  (keep in mind there is no explanation for any of these – they just are …)

Rule #1:  Do not yawn. Especially no yawning and talking at the same time.

Rule #2:  Do not have loud background noise.  That means TVs, radios, computers, vacuums, or hand mixers (can use, but need to alert him first).

Rule #3:  Do not sneeze and scream at the same time (some people do that without realizing it).

Rule #4:  Do not say “blah, blah, blah …”   while speaking.

Rule #5:  I need to see all your old photographs when I visit.

Rule #6:  I also need to take a mental inventory of all your DVDs, and any VHS movies you may have.

Rule #7:  I rule the TV. I will block the other channels while I’m here, but will unblock them before I go.

Rule #8:  No loud unexpected laughter. Please.

Rule #9:  Unlimited baths are expected.

Rule #10:  Friday night is pizza night. It must be gluten-free.

Rule #11:  I need to touch you on the chin and the head every time you yawn, sneeze, or sing.

Rule #12:  Keep things orderly and predictable. Please. I need to know the schedule.

Rule #13:  No deviations in the schedule. Please.

Rule #14:  Absolutely do not change your mind or give me more options.

There are so many other things I could add, so many that they don’t even seem odd to me anymore. To all those we’ve visited, I’m sorry.  I hope it doesn’t reflect as bad parenting.  It is what it is.  It’s part of his disorder — some of these rules come and go, some have been around for years.

What is the lesson here?  I’d appreciate any and all advice.  In the meantime, we will continue to follow the rules.  Because it keeps peace in our house.  And peace of mind is all we’re asking for …

“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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In Their Own Words – One New Message

August 28, 2010 27 comments


This “In Their Own Words” is by Laura Traw, who has a son with autism.

Sometimes I have a hard time watching shows regarding autism. No matter how I prepare myself, I find myself either turning off or walking away for awhile, then always coming back. My thought process always seems to be, “I am living this life. It’s too painful to watch someone else go through it as well.”

When HBO aired “Temple Grandin” (great job, by the way), my husband and I (on the west coast) watched the east coast feed while my best friend, who is in Tampa, watched at the same time.  Periodically, we would text one another, something like this, “how r u holding up” Me: “so far so good”. Then, there is a point in the movie when the doctors told Temple’s mother that Temple needed to be institutionalized. I don’t remember the exact correspondence between the two but the message was all too clear. There was no cure, no hope.

Another text came through, “are you ok” No, I’m not.

I looked at my husband, tears streaming down my face. I felt like someone was standing on my chest; I couldn’t breathe and I could not stop this waterfall. What was happening to me?

“I can’t watch this,” I said, as I got up and started walking out the room.

He stood up and came over to me. I could barely make his face out, because my eyes were covered with tears. He hugged me, really hugged me – which was good because I felt like I was going to collapse.

I put my head in his chest and sobbed, “I just can’t.” Without hesitation he stopped the DVR, and said “It’s okay.”

It wasn’t “okay” – this is our life!

Maybe I’ll learn or see something that will help, that I can do, I’m thinking. Why was I feeling like this? I have to pull it together, I have to be strong for my son. How can I fight this battle if I can’t sit through a movie or a show about autism?

My phone vibrates, another text, “this is so good, what an amazing movie.”

Amazing? This isn’t amazing – nothing about any of this is amazing. I text back, “had to turn off, can’t watch.”

Does no one understand this? I know this is a great story and I know she has made such strides and is a voice of hope, reason and even understanding to this disorder.

What is wrong with me?

I am strong. I have been strong. I will, and have fought for my little guy and I dare anyone to tell me we can’t or he won’t be able to do something because of autism.

Why can’t I watch this movie?

I leave the room, utterly and completely defenseless of my own thoughts. I start doing laundry, anything to keep me busy. My husband comes in. I keep my head down, because I know I am going to start crying; I am weak.

I can’t be weak.

“I love you,” he says, standing in the doorway. I pour the laundry soap into the washing machine; I still can’t look up. “I love you, too,” I say, my voice quivering.

He sets my phone on the counter and there it is, telling me, “one new message.” I read it – “you are an amazing mom.”

That’s it, just that.

How is it that when I am so weak, my husband is so strong or although miles and miles apart, a best friend still knows just what to say?

I don’t know, but with that and about an hour to pull myself together, I sit on the couch with my husband holding hands. Sometimes I’m clinching.

We laughed, we cried and WE made it through the whole movie. It’s still hard for me to watch some things, but I am so thankful for these amazing people who open themselves and their lives up for the rest of us to see, hear, read and learn from. We are not alone, I am not alone.

It is because of such courageous people, my family, my husband and, yes, my best friend that I, too, have opened up about this journey.

These are raw emotions, me, us, our son. There are some moments when I feel like I just can’t make it one more minute. Then there are moments like the other day when I pointed to the color red and my son said, “RED.” Or last week when we were at the beach and he could not get dirty enough. We didn’t have to spend hours wiping every piece of sand off of him, or wash his hands numerous times to make sure there was no more dirt. A big day for us!

My heart hurts. I get angry and yes, sad. I am strong, but sometimes I feel defeated. I cry alone, because I don’t want anyone to see my tears. But, I open myself up because I know that I have a great family, wonderful friends, a husband that I adore, a son that is the love of my life; and yes, I am an amazing mom!

“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 – Friday, 08.27.10

August 27, 2010 1 comment

Makiki Family’s Special Ed Suit Against State Revived (Honolulu, Hawaii)
The 9th Circuit Court of Appeals Wednesday, reversed a 2009 Hawaii District Court ruling that dismissed claims the state failed to provide adequate access to special education programs for disabled students. Read more.

Autism in Ghana – a parent’s perspective (Ghana)
Nana Kojo was devastated when he heard that his son had autism, a disorder of the mind that affects millions of children around the world. Read more.

Saratoga Springs school board addresses special education, data on student progress (Saratoga Springs, N.Y.)
Using data to foster student success and benchmarks in special education were the two themes Thursday at the school district’s last Board of Education meeting before students return for the 2010-11 school year. Read more.

Artistic talent will be on display tonight (Canada)
An evening fundraiser at the Saint John Arts Centre will highlight the artistic talents of autistic children. Read more.

Cops form new Special Victims Section (Greenwich, C.T.)
Aiming to provide specialized attention to the most vulnerable segments of the community, police have transformed the Youth Section into a Special Victims Section that will handle everything from youth investigations to missing persons cases. Read more.

In Their Own Words – Imagination

August 27, 2010 21 comments

This “In Their Own Words” is by Robin Alvarado, who has two children; her younger son has autism.

My three-year-old son was diagnosed with autism in November, 2009. Since then, he has been enrolled in special education preschool, therapies, etc., He was also classified as high-functioning. I must say my son has really come a long way these past eight months.

Although my six-year-old daughter is still young, and knows that her little brother is different than she is, she still views him as just that – her little brother. She is so compassionate with him, as if she is a little mommy. She loves to take care of him and is such a big helper to me.

She will also force him to play with her and interact with her. Not in a mean way, but in a way where he really has no other choice but to pay attention to her. I’m not sure that she understands why it is so difficult, but she still pushes him. Sometimes it will be overwhelming for him and I have to tell her to give him a minute to calm down, or that he needs a break. But she is so persistent. I’m not certain that she even realizes what she’s doing but I believe it is really good for him.

Last week, I was sitting in the living room watching TV and both my son and daughter came in the living room, dressed up in play clothes I have for her. She then introduced them as a prince and princess. I noticed that my son face looked as if he was having fun. He was smiling ear-to-ear. They then went back to her room. A few minutes later, they both walked in pretending they were ninjas. Believe it or not, my son was punching kicking the air, and making sound effects to go with the punches and kicks. He was doing imaginary play. That was huge for me to see. He has never done anything of the sort. EVER!!

I really believe that my daughter forcing him out of his comfort zone is doing him a world of good. If she can get him to participate in imaginary play, what else will she be able to get him to do? Thank God for my daughter.

“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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Parents and Friends Run Long Beach Marathon for Autism Speaks’ Autism Tissue Program

August 26, 2010 2 comments

This is a guest post by Kristin and Brian Thompson, supporters of Autism Speaks’ Autism Tissue Program (ATP).

On October 17, 2010 parents and friends of Reid Thompson will be running in the Long Beach Marathon to raise funds and awareness for Autism Speaks’ Autism Tissue Program (ATP). Reid, an 11-year-old boy with autism from Thousand Oaks, CA tragically and unexpectedly died in his sleep in August 2007. “It is our way of honoring Reid’s memory and helping an organization dedicated to autism research,” said Brian Thompson, Reid’s father.

Even though this was a catastrophic loss for the family, the Thompsons courageously made the decision to donate Reid’s brain tissue to the ATP within the critical time period of less than 36 hours after his death.  The cause of Reid’s death is unknown as the autopsy results were all normal, with the exception of his brain being slightly heavier than average (this is common among individuals with autism). Although medical experts cannot provide a definitive cause of death, they hypothesize that Reid died from a massive seizure, even though he had no history of seizures.

Reid’s parents continue to seek answers about his untimely death, not only for their own closure, but also to help other families affected by autism. “Reid had autism but we don’t know exactly why his life here with us was cut short,” said Thompson. “Leading scientists are working with the ATP and are already using tissue donated by Reid in hopes of providing our family, friends, and others impacted by autism with the answers we seek. Reid is a teacher and we hope his contribution along with the ground-breaking work being done by the ATP helps scientists understand autism, which will lead to a cure”.

The ATP makes brain tissue available to as many qualified scientists as possible to advance autism research and unravel the mysteries of this and related neurological conditions.  In fact, it is the only program solely dedicated to increasing and enhancing the availability of post-mortem brain tissue for basic research in autism.  Each precious donation to this program greatly adds to our understanding of the complexities of the human brain and the factors that contribute to autism.

Months after Reid’s passing, Brian met another parent, Ben Fesagaiga, who had just founded an all-volunteer non-profit called Train 4 Autism. Train 4 Autism helps people raise funds for various autism-related charities through participating in athletic events such as 5Ks, 10Ks, half marathons, full marathons, and triathlons.  In about three years time, the organization has grown to 35 chapters across the United States and has raised more than $100,000 for autism-related charities.

Team Reid’s Long Beach Marathon participants will include Reid’s father Brian, Brian’s wife Kristin, and Team Captain and Train 4 Autism Director of Communications Molly Rearick, Reid’s former teacher. Team Reid has participated in this event since 2008 and also has a presence at the annual Los Angeles Walk Now For Autism Speaks event in support of Autism Speaks.

To support Team Reid and their efforts at the Long Beach Marathon in 2010, click here.

More information on the ATP can be found at: www.autismtissueprogram.org or by calling (877) 333-0999. The ATP is deeply grateful to the Thompson family for their efforts to advance research into the causes and treatments for autism.

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