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Archive for July, 2010

Autism in the News – Friday, 07.30.10

July 30, 2010 1 comment

Dad and autistic son share slice of their lives in commercial (NY Daily News)
There are two reasons John Moore and his seven-year-old son Max got to make a commercial with famed Hollywood director Lasse Halstrom. Read more.

New Hampshire governor signs autism treatment bill (Concord, N.H.)
New Hampshire Gov. John Lynch has signed a law requiring insurers to cover more treatment programs for autistic children. Read more.

Autism and military families: Nonprofit will begin new branch Saturday for service members whose children have autism. (Costa Mesa, Calif.)
Five years ago, Justin Marroquin, now 7, was diagnosed with autism, which explained some personality quirks like moodiness, attention and social issues. Read more.

Autistic man who died in hot van was mother’s ‘sweet little boy’ (Philadelphia, Penn.)
“He had a man’s body, but he never grew up,” said a tearful Diane Nevins, speaking from the home in Oceanside, N.Y., that she shares with her husband, a retired New York police officer.
Categories: Autism in the News

In Their Own Words – Ten Things That I Wish You Would Accept, No Questions Asked

July 30, 2010 47 comments

This “In Their Own Words” essay is written by Lydia Wayman. Lydia is a 22 year old who “resides somewhere on the autism spectrum.”  Her three favorite things are her service cat, Elsie, her best friend and her mom. She recently wrote and published a book, “Interview with Autism,” for parents and caregivers about life on the autism spectrum.

I started blogging almost exactly a year ago as a way to process my circumstances better, as I always process better in writing, and hopefully as a way to demystify autism to parents and caregivers of those on the spectrum. I realized long ago that some people seem to have a knack for handling my quirks, while others … don’t.  This list, “Ten Things That I Wish You Would Accept, No Questions Asked,” arose from considering the things that the most positive people in my life have always done, while also thinking about what some not-so-positive people consistently do that causes a problem. I can’t speak to the truth of these statements for everyone on the spectrum, but I am guessing that there are many commonalities amongst us when it comes to these matters.

1. I can be surprisingly good at one thing (say, remembering conversations precisely as they happened many years after the fact) and surprisingly bad at another thing that you might think should be so much easier (like keeping track of receipts or remembering the procedure for filling a prescription).

2. Just because I have the words to type it does not mean that I have the words to say it.

3. I really do hate to melt down, especially in public. If there were another way out, I would always take it.

4. I never play stupid. If I ask a question or say I don’t get it, it means I don’t get it. Please don’t make me feel dumber by saying that I’m faking it, just because it seems straightforward.

5. What may be slightly bothersome to you, like the waistband on a pair of pants, can cause me to be a witch all day … or at least until I change clothes. If I’m crabby, it’s because something is physically uncomfortable in the sensory realm of things. Until that thing changes, I will continue to be crabby.

6. I can’t control my excitement over cats. So if you mention cats or point out a cat, realize that I’m going to get excited. Let me enjoy it. A little happiness never hurt anyone, eh?

7. I am often completely unaware of self-injurious behaviors. I scratch, hit, bite, and pick often, and much more frequently when I’m agitated for some reason. In the moment, I don’t know that I’m doing it; if made aware, it’s so compulsive that I almost physically can’t stop myself. But using my head, obviously I don’t like the results of it.

8. I am exactly the same person inside regardless of how engaged (or disengaged) I am with the environment and others in it. Yes, you might have to change some things based on how I’m reacting in that moment, but please continue to treat me like the same person that I am.

9. Engagement and happiness do not depend on one another! I can be just as happy off in my own world as I am fully engaged with you. However, a lot depends on you, here. If I’m disengaged and you’re forcing me to “act normal,” then no, I don’t feel very happy. If you’re interacting with me in a way that I can in that moment, then I can be as happy as I’ve ever been.

10. While autism does mean that I am absorbed within myself (aut means self, after all), that doesn’t mean that I don’t want you around. If you can come to me, rather than forcing me out of my world to come to you, then I’d love to let you in. There’s a whole world in here; maybe you should check it out.

“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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Ten Tips for Vacationing with Your Child – Part 3

July 30, 2010 2 comments

This guest post is by Elaine Hall, author of the memoir NOW I SEE THE MOON: A Mother, a Son, a Miracle and founder of The Miracle Project, a theatre and film arts program for children with special needs. She is also the mother of a fifteen-year-old son with autism. Discuss the book on Facebook and follow Elaine on Twitter @CoachE.

This is the final post in a three-post series about vacationing with your child who has autism; read the first post here and the second one here.

Tip # 7 Staycations: Same place, different experiences. Customize!

When I was a child we went on a family vacation every year, usually to the beach. One year, our finances were particularly low and we couldn’t get away – so my dad made a fun time of “Vacation at home!” My dad and mom set it up so that each child and parent got “their day,” and the other family members went along.  My dad’s choice was fishing at a nearby lake, my mom, “vegging” out at a local pool, my brother chose an amusement park, my sister a movie, and I chose going to an art museum. This special week stands out in my memory as one of the best vacations in my life.

Let your child be part of this planning process. Use a dry erase pad and write down possible ideas. Let your child circle or point to where they would like to go. For kids who are nonverbal – there is a new app for the iPad called Proloquo 2Go, which “provides a full-featured communication solution for people who have difficulty speaking.” Find what communication system(s) work best for your child so that your child with ASD can have a voice in choosing where they wish to go. Let each child feel special. If possible, you can bring along a teen volunteer to help out. For moms – maybe your special day can be going ALONE to a spa day, while the rest of the crew has a picnic. Refuel. It matters.

AMC theaters now offer Sensory Friendly films where our kids can walk up and down aisles, make noise, and just be themselves.

Tip #8 Get a special pass when you go to an amusement park (or other busy venues like concerts, plays, etc.).

Some children with ASD love amusement parks; some find them too stimulating or overwhelming. Again, preparation is the key to success. Before taking Neal to Disneyland, we showed him photos, went online and let him do a virtual tour. Once we arrived there, we had a pretty good idea of what he wanted to do. Remember too that your child’s interests may seem odd but they are his or her interests. (Neal could go on Space Mountain 10 times!)

Most of the major amusement parks have a special disability pass where your child and family members do not have to stand in long lines. Don’t be proud!  Get this pass! In fact, Neal is one of the most popular kids on our block, when it comes to going to Magic Mountain, his now favorite amusement park, since everyone in his party doesn’t have to stand in line!

Tip # 9 Enjoy the great outdoors.

Neal loves to be outside. I have seen him the happiest when he can be out all day long. Go camping, to the beach, hiking, have picnics, do things where your child can feel boundless with few opportunities to have to say “No,” or manage inappropriate behaviors. Today there are many outdoor programs that families with special needs can enjoy:

Leaps and Boundz
FACT Family
Surfers Healing
Autism on the Seas (look for the new Miracle Project on the Seas, next summer!)
Camp Surf in San Diego
Extreme Sports Camp

Tip #10 Be Here Now (wherever “Here” is that day)!

Give yourself the present of being Present. Enjoy this precious moment. I once attended a family surf camp where the dad had spent hours preparing his son for surfing: practicing standing on a surfboard, paddling in a pool, etc. However, once at the beach, his son was so excited about being in the ocean, that he just wanted to play and dance in the waves, he didn’t want or need to surf as planned. The dad moped on the beach, feeling this situation as one more failure. I suggested that he stop for a second and look at his child who was in complete joy. The father soon realized that it was his own need for his son to complete the task at hand, rather than enjoying the moments with his son.  He realized as we all do from time to time, that the gift of the present is sharing time, experiences, and engagement with each member of our family … in their own special way, and in their own special time.

As I look back, even that first seemingly “failed” beach trip where my mom and Neal spent time on the patio together, was actually a beautiful bonding time between grandchild and grandmother.

Enjoy the moments. Yesterday is gone, tomorrow is a mystery. Today is a gift that is why it is called the Present.

Vacation is in part, a state of mind.

Enjoy your summer. And please let me know how your vacation goes!!!


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Commemorating the 20th Anniversary of the Americans with Disabilities Act

July 29, 2010 1 comment

This post is by Mark Roithmayr, Autism Speaks’ President.

Earlier this week I had the honor and privilege of traveling to Washington, D.C., for special ceremonies to commemorate the 20th anniversary of the Americans with Disabilities Act (ADA).

The term “landmark legislation” is greatly overused, but like the Civil Rights Act of 1964, this law literally changed life for millions of people. The ADA has helped level the playing field for people with disabilities in this country, providing important civil rights protections and equal opportunities in the workplace and elsewhere.

As I took part in ceremonies at the Capitol Rotunda and, later, the White House, standing among other advocates for various causes, I found myself reflecting on those past two decades.

Twenty years ago, America barely recognized the word autism, nor understood what it meant for individuals to live with autism. Autism was absent from those founding moments two decades ago. Yet during the ceremonies this week, autism was acknowledged over and over again by elected officials, colleagues and advocates alike. From the floor of the House, Representative Patrick Kennedy referenced autism as one of two federal imperatives for increased funding. Later at the White House ceremonies, President Obama’s Domestic Policy Director Melody Barnes cited the autism movement as a being the central part of today’s disability movement. Next, actor Robert David Hall –himself a double amputee following a devastating car accident – took the opportunity to discuss his twin nephews, both on the autism spectrum, while introducing President Obama, poignantly telling the story of how his brother and sister-in-law have to “climb mountains every day.”

Listening to the group of eloquent speakers, all I could think about was how incredibly far the autism advocacy movement has come in just a few short years. Not only was the day remarkable for the recognition of autism and its overwhelming prevalence in our society – our 1 in 110 children – our 1 in 70 boys, but that these numbers have climbed to new heights being diagnosed more often than childhood cancer, juvenile diabetes and pediatric AIDS combined. There is no doubt that autism is now at the fore of the public’s consciousness as a disorder that is recognized as a national health crisis and a top public health priority

But the ADA ceremonies were about something even larger than our autism movement. It was a day to recognize disability rights as a core civil rights issue and a cause not for partisanship, but for uniting humanity at large. The quotes ran from Thomas Jefferson to Martin Luther King. President Obama honored President George H. Bush who passed the original legislation. Representative John Boener (R, OH) applauded James Langevin (D, RI) – the first quadriplegic to serve in the U.S. House of Representatives – who served as Speaker of the House for the day, the first time that Congress was presided over from a wheelchair.

Reflecting, I truly believe the ADA commemoration was about building on our autism victories, small and large, toward our collective future. The abilities of our community, our children, our teens, our young adults and our adults, are extraordinary and we have the collective will and the moral imperative to create an even better future. The path is clear.

  • Our autism community has the ability learn – but we need to ensure accessibility to education through the life span.
  • Our autism community has the ability to work – but we need to ensure accessibility to jobs.
  • Our autism community has the ability to live independently – but we need to ensure accessibility to housing; and not least,
  • Our autism community has the ability to be part of the wonderful social fabric of America – but we need to ensure access to community resources.

In the words of Thomas Jefferson, “the pursuit of happiness is an inalienable American right” and the autism community deserves no less.

We also encourage you to read Celebrating the 20th Anniversary of the Americans with Disabilities Act with Substance blog post by Kareem Dale.


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Luncheon Honors Autism Speaks Supporters, Ed and Matthew Asner

July 29, 2010 1 comment

From left to right: Ed Asner, Autism Speaks' Sarah Jennings, Matthew Asner

On July 19, a luncheon was held in Los Angeles to honor actor Ed Asner and his son Matt. Phillip Hain, Executive Director of the Los Angeles Chapter opened the program by giving an overview of what the chapter does in the community and talked about some of the local events. Attendees then heard from Dr. Clara Lajonchere, Vice President of Clinical Programs, who talked about the advances in science that have been made by Autism Speaks and its predecessor, Cure Autism Now, and how the Autism Genetic Resource Exchange (AGRE) has helped researchers be more efficient and collaborative with their studies. Marianne Toedtman, Associate Director of Family Services, talked about her challenges as a mother of a son on the spectrum, Family Services programs, and the current state of Family Services at Autism Speaks, particularly the Baker Summer Camp Program.

Ed talked about his involvement with Autism Speaks and how much work has been done since his son Charlie was diagnosed more than two decades ago. He implored the guests there to support Autism Speaks’ efforts in advocacy, family services, and science.

Matt told the attendees that when he was a teenager he was mad at his dad a lot, because his dad was the kind of guy who always took a stand on something and stuck to it, no matter what the cost was, to himself or others. And often the price he paid was very high. But now he realizes that his father set an example.  Having both a brother and son affected by autism, Matt has become a passionate voice for our kids on the autism spectrum, fighting for their right to a fair and equal education in Los Angeles public schools. He noted that attending the Los Angeles Walk Now for Autism Speaks a few years ago gave him the feelings of hope and empowerment to help others.

Councilman Tom LaBonge presented Ed with a proclamation from the city of Los Angeles and Phillip gave Matt a piece of artwork created by a teen with autism, as a thank you for his continuing efforts and support.

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Promising New Results from Fragile X Drug Trial

At the International Fragile X conference held in Michigan last week, researchers working in partnership with Seaside Therapeutics presented promising results from a Phase II clinical trial with compound STX209. The research was presented by Elizabeth Berry-Kravis, MD, PhD, (Rush University Medical Center in Chicago, Illinois) and Randi Hagerman, MD, (M.I.N.D. Institute).

The study followed 63 patients with Fragile X from three groups spanning 6 to 40 years of age. The aim of the study was to investigate the safety and efficacy of STX209 across a broad range of individuals with Fragile X. The research team specifically looked at behavioral and cognitive measures that might indicate benefit from the drug. Indeed, they found statistically significant improvements in sociability in a pediatric group who had scored low on scales of sociability prior to the treatment. This result is particularly important because impairments in social function are a core feature of Fragile X, and also a core feature of autism spectrum disorders (ASD).

In a press release from Seaside Therapeutics, Dr. Hagerman offered a perspective on the results her team has observed.  “A majority of the patients enrolled in the STX209 study are participating in the ongoing open-label extension study and are continuing to benefit from treatment with STX209,” said Dr. Hagerman. “Physicians and parents are reporting increased sociability and communication and decreased outbursts and tantrums. In several cases, patients have been successfully withdrawn from other medications, including mood stabilizers, anti-depressants and, most importantly, anti-psychotics—a significant benefit for patients given the severe side effects associated with this particular class of drug. It is my hope that, with further study, STX209 may be able to play a much needed role in improving the symptoms of fragile X syndrome and help patients and their families achieve an improved quality of life.”

These results are exciting for individuals and the families of those living with Fragile X.  However, perhaps the greater excitement lies in what may come next. Fragile X is the most frequently observed genetic syndrome in individuals with ASD. Synaptic over-excitability has been observed in animal models of autism and is believed to be a common neurobiological underpinning. Seaside Therapeutics is currently exploring the potential for benefit in individuals with ASD through a clinical trial of STX209 in adults, adolescents and children with ASD. We anxiously wait for further data on the use of this compound.

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In Their Own Words – Be Still

July 29, 2010 27 comments

Photo by Susan Frank Lowe

This “In Their Own Words” is written by Cheairs Frank Graves, a Charlottesville, Va. mother of two. Her son has autism.

“Be still and know that I am with you.”

These are words that I have heard in church and at Vespers during my days at summer camp, but it is my son with autism who is teaching me the meaning of these nine words.

“With you” is not exactly how I would describe my ongoing relationship with my son. There are days when he is present, laughing and smiling, and there are days when rolling on the floor and dropping marbles in front of his eyes are his activities of choice.  Words cannot describe the sadness I have felt when my son turns his back to me when I try to play with him or when he does not respond to his name. It is an empty feeling – a feeling of failure – and feelings of why.

But along this journey my son is teaching me. If I listen hard enough, he is screaming, “Enter my world!” when he turns his back to me.  If I sit next to him while he drops the marbles in front of his eyes, he might just look at me and smile.

“Be still and know that I am with you.”

If I lie on the carpet when he is rolling on the floor, he moves next to me.

“Be still and know that I am with you.”

If I sit next to him in the front yard, listening and repeating words back to  him – words that he is saying, then I can see his beautiful, blue eyes light up and his crooked smile appear.

“Be still and know that I am with you.”

If I am very still as he comes down the stairs in the morning, I can begin to smile at his ritual of closing off the bedroom and bathroom doors that lead into our room.

“Be still and know that I am with you.”

If I am present when he crawls into the bed and folds himself into the warm comforter, I can celebrate the little life that is lying next to me.

“Be still and know that I am with you.”

If I wrap my arms around him as he puts his head on my chest, I can hear him breathe. My sweet little boy.  My precious little boy.

Mommy, “Be still and know that I am with you.”

“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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