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"For I know the thoughts that I think toward you, says the LORD, thoughts of peace and not of evil,
to give you a future and a hope." Jeremiah 29:11 (NKJV)

Sharing resources, research, ideas, inspiring scripture, success stories and even failures...

Saturday, March 29, 2014

The numbers are in!

The new statistics for ASD prevalence from the CDC are in and they are staggering! I'm still trying to wrap my head around what this all means. Now, more than ever, we need to work towards autism ACCEPTANCE. These kids are here, they are a part of everyday life. People are AWARE, now we need folks to ACCEPT our loved ones into their own daily lives. Ignorance leads to fear and fear leads to prejudice. Some families get irritated when people say that they couldn't tell their loved ones have autism. My feeling is that, yeah, you're right, our loved ones are more like yours than you think. Don't let a label keep your neurotypical loved ones from enriching their lives by having someone with ASD in them, or better yet, by having a friend with ASD. Here's the latest from the CDC: http://www.cdc.gov/media/releases/2014/p0327-autism-spectrum-disorder.html

Blessings!
DC

Press Release

Embargoed until: Thursday, March 27, 2014, 1:00pm ET 
Contact: CDC Media Relations
(404) 639-3286

CDC estimates 1 in 68 children has been identified with autism spectrum disorder

Latest snapshot shows proportion of children with autism and higher IQ on the rise
Infographic: Number of children identified with ASD: 1 in 68.
Number of children identified with ASD: 1 in 68
The Centers for Disease Control and Prevention (CDC) estimates that 1 in 68 children (or 14.7 per 1,000 eight-year-olds) in multiple communities in the United States has been identified with autism spectrum disorder (ASD).  This new estimate is roughly 30 percent higher than previous estimates reported in 2012 of 1 in 88 children (11.3 per 1,000 eight year olds) being identified with an autism spectrum disorder.    The number of children identified with ASD ranged from 1 in 175 children in Alabama to 1 in 45 children in New Jersey.
The surveillance summary report, “Prevalence of Autism Spectrum Disorder among Children Aged 8 Years – Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2010,” was published today in the CDC’s Morbidity and Mortality Weekly Report.  Researchers reviewed records from community sources that educate, diagnose, treat and/or provide services to children with developmental disabilities. The criteria used to diagnose ASDs and the methods used to collect data have not changed.
The data continue to show that ASD is almost five times more common among boys than girls:  1 in 42 boys versus 1 in 189 girls. White children are more likely to be identified as having ASD than are black or Hispanic children.
Levels of intellectual ability vary greatly among children with autism, ranging from severe intellectual challenges to average or above average intellectual ability.  The study found that almost half of children identified with ASD have average or above average intellectual ability (an IQ above 85) compared to a third of children a decade ago.
“Community leaders, health professionals, educators and childcare providers should use these data to ensure children with ASD are identified as early as possible and connected to the services they need,” said Coleen Boyle, Ph.D., M.S. hyg., director of CDC’s National Center on Birth Defects and Developmental Disabilities.
The report also shows most children with ASD are diagnosed after age 4, even though ASD can be diagnosed as early as age 2. Healthy People 2020, the nation’s 10-year health objectives, strives to increase the proportion of young children with an autism spectrum disorder (ASD) and other developmental delays who are screened, evaluated, and enrolled in early intervention services in a timely manner.
“The most important thing for parents to do is to act early when there is a concern about a child’s development,” said Marshalyn Yeargin-Allsopp, M.D., chief of CDC’s Developmental Disabilities Branch. “If you have a concern about how your child plays, learns, speaks, acts, or moves, take action. Don’t wait.”
If you suspect that your child may have ASD:
  • Talk to your child’s doctor about your concerns.
  • At the same time, call your local early intervention program or school system for a free evaluation.
  • It’s never too late to get help for your child.
CDC’s “Learn the Signs. Act Early.” program has joined with others across the federal government to promote developmental and behavioral screening through the Birth to 5: Watch Me Thrive campaign, which will be launched today. The program will help families look for and celebrate milestones; promote universal screenings; identify delays as early as possible; and improve the support available to help children succeed in school and thrive alongside their peers.
“More needs to be done to identify children with autism sooner,” said Boyle. “Early identification is the most powerful tool we have right now to make a difference in the lives of children with autism.”
Through the Affordable Care Act, more Americans will have access to health coverage and to no-cost preventive services, including autism screening for children at 18 and 24 months. Most health insurance plans are no longer allowed to deny, limit, or exclude coverage to anyone based on a pre-existing conditionExternal Web Site Icon, including persons with autism spectrum disorder.  Visit Healthcare.gov or call 1-800-318-2596 (TTY/TDD 1-855-889-4325) to learn more. Open enrollment in the Marketplace began October 1 and ends March 31, 2014.
For additional information on:

Friday, February 21, 2014

A seismic shift

OK, the verdict is in: Finding Peace in the Autism Puzzle has found its second wind! Thanks to all who shared their input and for your support. Now, back in the saddle again and where we're headed:

seismic |ˈsīzmik|adjectiveof or relating to earthquakes or other vibrations of the earth and its crust.• relating to or denoting geological surveying methods involving vibrations produced artificially by explosions.• figurative of enormous proportions or effect there are seismic pressures threatening American societyNew Oxford American Dictionary http://www.oxfordreference.com/view/10.1093/acref/9780195392883.001.0001/acref-9780195392883

{EVERY single night as part of our bedtime routine we watch a documentary about the Earth: earthquakes, volcanoes, lava. Don't ask me why! The household can not settle for the night without watching it; it's our unspoken ritual, common to so many families touched by ASD. It is NOT my favorite, but if it puts everyone to sleep: PRICELESS! Having seen this documentary every single night for at least the past 6 months, words like "seismic," "plate tectonics," and "pyroclastic flow" are now a part of my daily vocabulary. So, it is simply natural for me to use this phrase as the title of this post, and so fitting!}


A few years ago we had a small earthquake here in the Northeast. It was small and lasted only seconds, yet the sensation was terrifying and completely disorienting. It only took a minuscule tremor to make us appreciate solid ground and how we take it for granted. Sometimes the physical ground we stand on may be still and stable, but our social/emotional/spiritual/mental ground can be completely off the Richter scale!

You see, as a family we decided to make some tough decisions this past fall. If you noticed, the definition of "seismic" includes words like "explosions" and "enormous proportions or effect." I did not choose that word lightly. The changes our family made surely felt like explosions and absolutely had an "enormous effect" on our daily lives. So much change happening so fast... all for good reasons, but all together they made for a shift of epic proportions, including losing most of our outside social networks and supports. We knew in the end it would be worth the struggle and the loss, but the process felt like slowly peeling off an old bandage.

In the documentary, we learn that after each destructive eruption of a volcano, the lava cools into rock and enriches the soil. Before long, new lush green life returns and what once was the product of a destructive force becomes a paradise full of life (case in point: the islands of Hawaii). So, here we are... Now that the dust has settled, we see the value in having gone through the process, knowing we have come out a much stronger and closer family than before.

You see, I've always said that the first step towards peace on this journey is "acceptance." As I've previously written, that involves grieving the dreams you may have had for your child/family/life. But moving out of the grief and into acceptance is the first step in enjoying your child/loved one and your life for what it is. It's not giving up, it's shifting your view! In my twenty years of working with kids who have ASD, I have seen first hand how much better off a child and his/her family fares when they have accepted their reality and learned to love their child and their life for what it is (not what they expected it to be). Now as a parent, I have learned to find the joy in the smallest wins: eye contact, following a direction, going one night without wetting the bed, trying a new food... celebrating each small win keeps us thinking positively.

This leads me to the main reason why we made the tough choices that we did. As a family, we have made the seismic shift from "autism awareness" to "autism ACCEPTANCE." It's not like people aren't "aware" that our son is different! We don't need pity, we don't need to complain, we just want to be a part of this world. Perhaps our family's shift from substantially separate special education to inclusive regular education forced us to move in that direction. For once, we are hearing that all of the adults in my son's life are responsible for teaching him the tools he needs to be a part of "this world," not keeping him in a bubble of a giant label. We're not trying to "fix" him, we're trying to "guide" him.

You see, once you feel that acceptance, you have NO tolerance for pity or exclusion! I just got flat out tired of feeling pitied and excluded, of the whispers and the pointing fingers. Most of all I got sick of hearing my own self complain! Ironically, the catalyst in moving me in this direction was hearing the head of a leading autism organization describe autism families as needing to be pitied and felt sorry for because our lives are such calamities. If we truly believe the Scriptures in Romans 8:28 (And we know that all things work together for good to those who love God, to those who are the called according toHis purpose- NKJV), then we know this is the right choice for our lives: acceptance is the first step towards peace because we trust that God will make this work for good! But this involves eliminating toxic and negative influences around us and, instead, surrounding ourselves with those who are supportive, uplifting and ACCEPTING. Ripping off that old bandage to allow healing, letting the hot lava scorch the land so new life can grow into a beautiful paradise!

Now, don't get me wrong, ACCEPTANCE is not the same as COMPLACENCY! Just because we accept our children and loved ones for who they are, doesn't mean we give up on progress. Praise, reinforcement, exhorting, loving encouragement can all be tools to guide our loved ones towards the next level of achievement. Acceptance does not mean giving up on your goals and dreams. It simply means you learn to be OK with the way things are now, while you work towards getting better. Will it be harder than for families without ASD? Sure! But the rewards and the joy will also be that much sweeter!

My family's life has made quite the transformation and although things are still rocky, like lava after it's cooled, I know in the end we will see paradise! We will find a new house of worship where we feel "at home," we will find new organizations to support through fundraising that share our views of acceptance, we will continue to be a part of the world and capitalize on every opportunity to help others see the joys we live every day... not the calamities you read about everywhere else... and share those joys with everyone we encounter.

So, here's where this blog is going:
- continue to share new research findings
- share stories of amazing individuals with ASD and their accomplishments
- share resources for parents and families
- share inspirational devotionals, songs, videos and stories
- less opinions, no more complaining, no more pity parties, no more personal disclosure

So, welcome to the new view! I am at peace! I pray you, too, will be able to find your peace through acceptance, knowing that "all things work together for good to those who love God" (Rom 8:28 NKJV).
Blessings!
DC

Lava rock bringing new life to paradise, Kiholo Bay on the Big Island of Hawaii
http://www.to-hawaii.com/big-island/beaches/kiholobay.php

Saturday, February 15, 2014

Readers! I need your input!!!

It has been nearly three months since I wrote here... Soon after my last post things just unraveled all around us and life needed my 100% undivided attention. To say that our lives have changed since Nathan started kindergarten is such an understatement that I don't even know where to start! In all of these changes I've had a shift in my view of being an autism family. I'm no longer about "awareness," I am about "acceptance." I don't want folks to feel pity for me, my family and my son. I want people to accept us for just the way we are and be OK with that. No pretenses, no tiptoeing, no walking on eggshells. We are what we are and it is what it is!

So, in weighing my options to: a) respect my son's privacy, and b) continue to be an active advocate in the autism community, I have come to a crossroads. Do I close down "Finding Peace in the Autism Puzzle"? Have I finally come to the place where I am at peace, I have accepted our lives and I'm ready to move on? Do you as my readers wish that I continue to share information about current research, current news and trends regarding autism and posting uplifting messages of hope, faith and peace?

I would like my readers to help me make this difficult decision. I am perfectly happy to continue to be a source of information for those who are interested, but one thing is for sure, I will no longer be sharing information about my family and our situation out of respect for my son.

So, please reply below and let me know your thoughts. I do this for my readers. I've found my peace, but, if you wish, I will continue to be here to help you find yours!

Blessings!
DC

Wednesday, November 20, 2013

Celebrities who have children with ASD


Celebrities with children and/or loved ones with ASD

Recently I read a post on a social network site that pondered the idea of how different the world could be if the "Royal Baby," first born to Prince William and Catherine the Duchess of Cambridge, would be diagnosed with ASD. This caused quite an uproar, causing some parents to reprimand the person who asked the rhetorical question for "wishing ill" upon the royal couple. Others confessed that they, too, wondered if it would change anything. This opened quite a can of worms and, to my surprise, all these comments started flying around about celebrities who "hide" their children's disabilities. Sure, the Royal Family is famous for their history of hiding their "imperfect" or "defective" children, but surely not ALL celebrities do the same... or do they??? This got me thinking and I decided to do some searching online to see what I could find.

In this country, celebrities are viewed as somewhat "royalty" and their actions influence many. In the case of celebrities with children or loved ones with ASD, some are highly vocal about it, others are silent but active in the community, and then there are the ones who just stay silent. Below is a list of "known" celebrities who have children with autism spectrum disorders (in no special order!!!). 

Click on any of the highlighted text to open links related to each of their stories. I just wanted to share these stories to let people know that there are more celebrities out there talking about their children's autism and doing so much for the communities! I have divided the list into three sections: 1) Active "on the front lines," 2) Quiet but active, and 3) Silent majority. I think you'll be surprised with what I found. I really could care less about whether celebrities make it public or not, but it sure was refreshing to read about the wonderful things so many of these folks with some power of influence are doing within their communities. Click on any highlighted text to go to their respective stories or websites. I hope you'll find their stories inspiring! This is a LONG post that took me MONTHS to compose, so bookmark it and come back to it for reference! :)

Blessings!

DC

The active ones "on the front lines":
1. Holly Robinson Peete 

This actress and NFL quarterback, Rodney Peete, have four children together. One of their sons, Rodney Jr., was diagnosed with autism when he was 3 years old. They run a non-profit organization out of LA called HollyRod, which helps families with children who have autism. They are also highly active within the autism community, including Autism Speaks. To learn more about HollyRod, visit their website: http://www.hollyrod.org/holly/#.Uj-I6eCPIsp

2. Toni Braxton 

Toni Braxton's son son, Diezel, has autism. The R&B singer has been very vocal about doctors' reluctance to diagnose the condition right away, but instead recommended she should wait and see. She is now a major advocate for early detection and intervention for individuals with ASD and has been a spokesperson for Autism Speaks.  
3. Dan Marino 

Former Miami Dolphins quarterback Dan Marino has a son named Michael who is diagnosed with autism. Like Toni Braxton, the Marino family was told by the doctor to wait and see how their son developed before diagnosing him with autism at age 2. Dan and his wife, Claire, started the Dan Marino Foundation to help countless families in partnership with Miami Children's Hospital in Florida, which specializes in treating children with autism and other developmental disorders. Michael is now an adult and, after receiving intensive therapy at an early age, is now reportedly living a wonderful, productive life.
4. Dough Flutie 

Former NFL quarterback Doug Flutie’s son, Doug Flutie Jr., was diagnosed with autism, specifically Childhood Disintegrative Disorder (one of the rarer forms of "Pervasive Developmental Disorders" now commonly known as ASD). He and his wife, Laurie, have been fervently active in the autism community through fundraising, autism awareness campaigns and community grants. In 200 they established the Doug Flutie Jr. Foundation and stand by their motto of, "Helping families along the way...proudly serving the autism community since 1998."

5. Tommy Hilfiger and Dee Ocleppo Hilfiger 

Ocleppo has been quoted saying that she and her now husband initially bonded over shared family values. His older daughter and her son have been diagnosed on the autism spectrum. Both Tommy and Dee have been extremely active with Autism Speaks, making Public Service Announcements (PSA), fundraisers and various high-profile events to increase autism awareness.


6. Jaci Velasquez

Dove Award-winning Latin Christian contemporary singer, Jaci Velasquez, was named the Spokesperson for the 2013 Tennessee Walk Now For Autism Speaks. Jaci is married to Nic Gonzales, fellow Christian artist and lead singer of the Latin Christian contemporary band Salvador. Their son, Zealand, was diagnosed with autism in kindergarten.
Read more at http://global.christianpost.com/news/jaci-velaszquez-named-spokesperson-for-2013-tennessee-walk-now-for-autism-speaks-106889/#tS9elom0HAJXizok.99


7. Curt and Shonda Schilling 
This former major-league baseball pitcher with several World Series championships and a well-known legacy of the "bloody sock" while pitching with an open ankle injury to bring the Red Sox their first World Series victory in 86 years and his wife, Shonda, have a son with Aspergers named Grant. Shonda authored a New York Times Best Selling book, The Best Kind of Different, about her experiences as a parent of a child on the autism spectrum. They are both active in spreading autism awareness and sharing their experiences for the benefits of others.

8. Sylvester Stallone 

Another one of the celebrities who has an autistic child is Sylvester Stallone. His son Seargeoh was diagnosed with autism at age 3 after the infamous "Rocky" star and his former wife, Sasha Czack, recognized that he was having difficulties with communication. They refused to remain silent and Sylvester openly discussed the diagnosis and its impact in an interview with People Magazine in 1995. In 2005, he narrated a documentary and educational video produced by Rob Reiner titled A Child with Special Needs to help families cope with the diagnosis of autism. After the untimely death of his second son with former wife Sasha, Sage Stallone (who died of heart disease at the age of 36 in 2012   http://www.people.com/people/article/0,,20625980,00.html), the family requested that in lieu of flowers, donations be made to Autism Speaks in honor of Seargeoh. 


9. Tisha Campbell-Martin and Dwayne Martin 

This actress and actor duo has been extremely vocal and active within the African American autism community. Their son, Xen, has been diagnosed with an autism spectrum disorder. They began the foundation, Color My Mind, to raise funds and awareness of autism targeting African American families. She recently completed a documentary with the same title and continues to work fervently for the cause. To read more about their story: http://www.youtube.com/watch?v=LZvI66eZ3PI

9. Ernie Els 

South African PGA golf champion, Ernie Els and his wife, Leizl, are the proud parents of their son, Ben, who has been diagnosed with ASD. In 2009 they established the Els for Autism Foundation and hope to open the Center of Excellence in 2015. The center is described as follows: "The physical components include an educational program for 300 students ages 3 to 21, applied research, medical and professional services, transition to adulthood and its myriad of aspects including adult living and job training." Ernie holds a yearly golf challenge to raise funds for his organization. Like Tommy Hilfiger and Toni Braxton, Ernie has joined forces with Autism Speaks and made a PSA to raise autism awareness internationally. To learn more:
Els for Autism: http://www.elsforautism.com/site/PageServer?pagename=Els_events_April_Autism_Awareness
Center of Excellence: http://www.ernieels.com/els_for_autism/center_of_excellence/index.html
Golf Challenge: http://www.elsforautism.com/site/PageServer?pagename=golf_challenge
Autism Speaks PSA: http://www.youtube.com/watch?v=ZDc4auio2oQ

10. Jamie McMurray 

In honor of his niece who has been diagnosed with autism, NASCAR driver, Jamie McMurray, has used his high profile and his voice to fuel the autism awareness campaign. He started the Jamie McMurray Foundation and has also made a PSA with Autism Speaks
11. Jenny McCarthy
Although not my favorite person, there is no doubt that the Playboy model/actress/comedienne Jenny McCarthy is one of the most well known celebrities with child on the autism spectrum. Her son, Evan, was diagnosed with autism in 2005. The actress claims that this is what caused her divorce with her husband, as he was unwilling to deal with their son's condition. Since then, Jenny McCarthy has been an advocate of the condition. She is well known for her beliefs that childhood vaccines cause autism and that the condition can be controlled through proper diet. More recently, Jenny has joined the cast of the daily talk show The View and frequently uses that platform to express her position on autism care.


12. Jaqueline Laurita 

Known for her role on the reality show Real Housewives of New Jersey, Jaqueline revealed to the world that her son, Nicholas, has been diagnosed with autism. She has been extremely public about her journey, but not as active in fundraising or other organizations. Read more here: http://www.huffingtonpost.com/tom-murro/jacqueline-laurita-opens-_b_1848658.html

The quiet but active:

1. Ed Asner 

Actor probably best known for his role in the 70's sitcom, The Mary Tyler Moore Show, and president of the Screen Actor's Guild. His son, Matthew, was diagnosed with autism around the age of 7 or 8 and is now an adult and has served as executive director of the Southern California chapter for Autism Speaks. He also has a grandson who was diagnosed with ASD. Not very visibly active within the autism community, he gave an interview for a video called Faces of Autism, has hosted poker tournaments to benefit Autism Speaks and Ed is quietly active with Autism Speaks.  He serves on the advisory committee for Aspiritech, a suburban Chicago firm that employs persons with autism spectrum disorders to test and program software.


2. Joe Mantegna 

The actor known for his role on the drama Criminal Minds, has a daughter who is diagnosed with ASD. He has been quietly but actively involved in the autism fundraising and awareness campaign for decades. His wife, Arlene, created the Autism Families Together Network.


3. Gary Cole 

The actor known for his roles in the movie Office Space and the HBO hit series Entourage has a daughter, Mary, who was diagnosed with ASD at the age of 2 in 1995. Gary is highly active and supportive with Autism Speaks and The Help Group. Read more of this story: http://celebritybabies.people.com/2009/03/28/gary-cole-opens-up-about-daughters-autism/  


4. Steven Stills 

Known as a member of the music group Crosby, Stills, and Nash has a son, Henry, who was diagnosed with Asperger's syndrome at age 3. He had been spinning things and lining up cars. "I'm shy about going public with this," Stephen explains. Kristen, his mom, believes autism is caused by a combination between genetic predisposition and environmental toxins. "Henry didn't have the regressive thing," she explains. "He was always a little 'off.' It was more pronounced at 2 because that's when kids are more social." In 2013, he and his wife decided to organize a concert for Autism Awareness Month: http://articles.latimes.com/2013/apr/08/entertainment/la-et-ms-stephen-stills-benefit-20130409

5. Aidan Quinn 

Actor Aidan Quinn has a daughter diagnosed with autism. "The incidence of autism has gone up 500 percent since my daughter was diagnosed," says the actor. He is quietly involved with several organizations for autism research.


6. John Schneider (1) 

Dukes of Hazzard star John Schneider’s son, Chasen, has been diagnosed with Asperger’s syndrome. "Chasen responded well to speech and language therapy and went from there to occupational therapy. But some things that most children just kind of learn by osmosis need to be taught to a child with Asperger's." John has also been quietly involved with Autism Speaks.


7. John Schneider (2)

No known relation to the actor, NFL's Seattle Seahawks' general manager, John Schneider and his wife, Traci, have been quietly active in the autism campaign. Their son, Ben, has been diagnosed with autism. They have been actively raising funds and awareness and are launching Ben's Fund in partnership with the Families for Effective Autism Treatment (FEAT) of the state of Washington to help provide grants and funding to families in need.


Just some of the "silent majority." I'm sure there are PLENTY more, but they choose to remain silent...

1. John Travolta and Kelly Preston 

Actors John Travolta and Kelly Preston’s first son, Jett, had autism before sadly passing away at the age of 16 after he had a seizure. The couple, who are Scientologists, didn’t talk about their son’s condition until he was testifying to a grand jury after the death of his son and revealed his son was indeed autistic. Preston said her son was "the most wonderful son that two parents could ever ask for."

2. Shawn Stockman 

The R&B singer best known for being a member of the grop Boyz II Men revealed his "private battles" with autism in an exclusive interview with CNN. Stockman describes how his world came crashing down 9 years ago when his then 2-year-old son Micah was diagnosed with autism.


3. Will Clark 

Former Major League Baseball player nicknamed "The Thrill", best known for his time with the San Francisco Giants. Will's son, Trey, who was born around 1996 was diagnosed with autism shortly after the age of 2. Since Will was still playing baseball at the time he admits that wife, Lisa, is the one who handled all the therapy appointments.

4. D.L. Hughley 

The comedian and radio personality has an adult son who is diagnosed with Asperger's Syndrome. Unfortunately, Mr. Hughley has not been very kind with the use of his words in regards to his son's disorder, so I will just put his name on the list as a "dishonorable mention."


5. DiDi Conn 

Best known for her performance as "Frenchie" in the movie Grease, DiDi Conn's adult son, Danny, was diagnosed with PDD-NOS at the age of 2. He is now more accurately described as having "high functioning autism."Didi has spoken of her son's diagnosis but continues to be part of the "silent majority"... or at least one of the ones we know about...
http://www.cnn.com/2009/HEALTH/04/02/conn.autism/


6. Richard Burton 

The well known actor who was married, not once, but twice to the graceful Elizabeth Taylor has a daughter, Jessica, who was diagnosed as autistic. Very little is known about her story, and what we know is very sad, including spending most of her life in an institution in New York:
http://www.thefreelibrary.com/The+Richard+Burton+story%3A+Part+3+-+Heartbreak+of+devoted+dad%3B+STALKED...-a062274373


7. Angie Dickinson and Burt Bacharach 

She's the actress best known for her TV role as the lead in "Police Woman." He is an accomplished and award winning composer, musician and performer. Together they had a daughter, Nikki, who was born extremely prematurely, was a very late talker, lacked social interactions and coping skills. Later in life she would be diagnosed with Asperger's Syndrome. Angie's only daughter, she spent most of her life in various hospitals and institutions. Sadly, Nikki committed suicide in 2007. Angie told her story in 2010 at the age of 78: http://www.parentdish.com/2010/09/29/angie-dickinson-reveals-tormented-motherhood-with-aspergers-dau/
Burt told his side of the story as well: http://www.dailymail.co.uk/home/event/article-2321487/Burt-Bacharach-married-times-lost-daughter-suicide--long-tells-story-words.html


8. Branford and Wynton Marsalis 

The award-winning and "genius" jazz musicians, known for their mastery of the trumpet and clarinet, have a younger brother, Mboya, who is autistic. Very little is known about him, but the following piece is quite touching: http://injectingsense.blogspot.com/2006/06/inspiration-of-love.html

Thursday, October 17, 2013

National Disability Employment Awareness Month

Hi all! I am reposting this great article that my wonderful friend, Kerry Magro, wrote for the Autism Speaks blog. As you may know, October is national disability employment awareness month.  Kerry's article focuses advice on how young adults with autism can prepare for entering the work force. Here are some startling statistics:

-The number of such (autistic) individuals has increased by more than 121 percent from 2002 to 2006. Moreover, though adults with autism were employed at higher rates than most disability groups investigated, they tended to work far fewer hours and earn less in wages per week. The study also found that adults with autism were among the most costly individuals to serve. http://www.ncbi.nlm.nih.gov/pubmed/19369389

-For adults with autism, Autism Speaks has found that 9 out of 10 either are unemployed or underemployed, regardless of their IQ or education level. http://www.autismspeaks.org/advocacy/advocacy-news/adult-employment-new-allies-come-board

-One in 3 young adults with autism have no paid job experience, college or technical school nearly seven years after high school graduation, a study finds. http://usatoday30.usatoday.com/news/health/story/2012-05-14/autistic-young-adults-jobs/54954292/1
http://www.nimh.nih.gov/news/science-news/2012/many-youths-with-autism-not-employed-or-in-college-2-years-after-high-school.shtml

OK, enough depressing news, now some upbeat words from Kerry. Please feel free to pass it on! And if you haven't already done so, pick up a copy of Kerry's book, "Defining Autism from the Heart," available at amazon (http://www.amazon.com/Defining-Autism-From-The-Heart/dp/0615818102)

Blessings!
DC

Posted: 14 Oct 2013 06:00 AM PDT
Autism Speaks Staffer Kerry Magro shares his experiences finding employment and tips to help other adults with autism to do the same.

This is a post by Kerry Magro, Social Marketing Coordinator at Autism Speaks! Kerry was diagnosed with autism at age four. He is a self-advocate and recently released his debut book "Defining Autism From The Heart" in which he discusses his life on the spectrum. 
Last March, I started working full time for Autism Speaks as a Social Marketing Coordinator. After finishing my course work for my Masters in January, I was thrilled that Autism Speaks would offer me an opportunity for my first full time position within their organization.
My employment record before this included several internships and part time jobs. As we get further into National Disability Employment Awareness Month, I wanted to share some tips I’ve learned from my experiences with individuals with autism looking for employment.
1.     Find your passion and maximize it.
During college, I was constantly told about the hardships I would face trying to find a job in this economy. One way I managed to work through that was working on my first book called “Defining Autism From The Heart”. I have always loved to write and using that passion to do something I was interested in really benefited me. During college, I also started the paperwork to establish my 501 (c) (3) non-profit organization to build on another passion of mine, Self-Advocacy. I know these both seem like big projects and they did take a few years of work to accomplish. But no matter what you do, you should always be reflecting on what you’re passionate about and try to turn those passions into opportunities for yourself.

2.     Ask Questions.
In school they always tell you that the only dumb question is not asking that question. I’ve always seen asking questions as a critical element to whatever you are doing. No matter what type of education you have, self-advocating and being aware are key to any success you’ll have. Many young kids I know with autism have trouble with this. For those educators out there, teaching these “social skills” and self-advocacy skills can be critical to future success.
3.     Do Your Research.
This goes hand-in-hand with what I mentioned earlier about reflection. Research needs to become both an internal and external factor in your efforts to find a job. You need to target your strengths and then capitalize on them. Take the first two tips above, internally try to process this and then switch to external research, which is ultimately who is hiring and if a job isn't available, what possibilities there are in these situations to create volunteer/internships. Getting experience as a volunteer or an intern may open the door to entry-level employment within organizations or companies.

4.     Don’t Run From Learning Experiences
Many individuals with autism who get an early diagnosis have already been working a nine to five job focusing on their therapies. So as young adults, they have already had work experience getting themselves to the point where they can be employed today. Hard work is not new to them. No matter what’s on the table, you should always give it a test run! Make sure you are very open about the accommodations you need in that workplace and then give it a few days to feel it out.
5.     Don’t Sell Yourself Short! Reach for the Stars!
No matter if this is the first job you are looking for or your 30th, never sell yourself short. Always go in with the mantra that no matter if you have autism or you don’t, you can and will achieve greatness. I always tell kids I consult for to “define their autism.” Go look for work with the confidence that you are who you are and that you have a passion and unique ability that can be valued in the workforce. Then find the places that will best value that.
Individuals with autism are reaching adulthood every day. I encourage those young adults out there who do have positive job experiences to share them with our community. When I was a kid, I didn’t know that one day I would have a job in something I enjoyed, but I do now and it’s an amazing feeling! Our autism spectrum is very huge, don’t get me wrong, but I do believe there are opportunities out there and more will be available in the future.

To learn more about National Disability Employment Awareness Month go here. You can also download our Employment Tool Kit to help in your search for a job here

Sunday, September 22, 2013

Great article on play and autism

Blessings, everyone! It's been a busy month in our household with our little guy starting kindergarten! I have a wonderful piece that I'm working on right now, but while I polish that off, I wanted to share this great article I read about play and autism. I hope you find it helpful in understanding your loved one(s) with ASD. As usual, I will post the link in my Parent Resources page for future reference.

Have a blessed week!
DC

What Is 'Play' to a Child With Autism?

Motion preferred to arts and crafts or pretending, study finds
Tuesday, August 27, 2013
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TUESDAY, Aug. 27 (HealthDay News) -- When free to choose, kids with autism pick games that engage their senses and avoid games that ask them to pretend, a new study finds.
Experts said the results are not surprising. It's known, for instance, that when children do not show an interest in pretend play, such as "feeding" a doll, by about age 2, that is a potential sign of an autism spectrum disorder.
What is unique about the new study is that it went out into the real world, said lead researcher Kathy Ralabate Doody, an assistant professor of exceptional education at the State University of New York, Buffalo State.
Doody's team spent six months observing children who attended a local museum's Au-some Evenings, a monthly program designed for children with autism. The program offered 20 exhibits with different activities, including a train that children could climb on, arts and crafts and a make-believe farm where kids could pretend to pick vegetables and collect eggs.
The researchers found that children with autism were naturally drawn to activities that got them moving, or allowed them to watch moving objects. The biggest crowd pleaser was an exhibit in which kids climbed a short staircase and dropped a ball into a track to watch it travel over hills. Another favorite was a windmill that the children could spin.
On the other hand, arts and crafts, and exhibits that required pretending were the least popular, according to the findings, which were reported in a recent issue of the North American Journal of Medicine and Science.
"We know that kids on the spectrum have a fascination with things that move, and with repetition," Doody said.
In contrast, she said, pretend play requires "putting yourself in someone's shoes," and talking and acting as if you were another person. That's an ability with which children with autism spectrum disorders struggle.
The current findings are what you would expect, said Dana Levy, a clinical assistant professor of child and adolescent psychiatry at NYU Langone Medical Center, in New York City.
"I think it's a really nice idea," Levy said, referring to the museum's autism spectrum disorders program.
"We do know that kids with autism are able to practice social skills when they're doing something they enjoy," Levy said. So if an activity gets your child around other kids -- and talking or learning to take turns, for instance -- it could benefit his or her development.
"If it becomes just a solitary thing, though, it's not really helpful," Levy said.
Plus, letting children do only the things they're innately drawn to can be limiting. When young children with autism spectrum disorders are in therapy, pretend play is typically part of it, Levy said.
But if there is a social setting with activities a child with autism enjoys, parents can use that as a door, Levy said. If your child loves the museum's stair-climbing exhibit, on your next visit tell him or her that you're going to try one new thing first and then go to the stairs, Levy suggested.
It's estimated that about one in 88 children has an autism spectrum disorder -- a group of developmental disorders that hinder a person's ability to communicate and interact socially. Autism spectrum disorders range widely in severity: Some children speak very little and have an intense preoccupation with just a few things, while other kids have normal or above-normal intelligence and milder problems with socializing.
For the current study, Doody's team watched children during six Au-some Evenings events. An average of 31 children with autism spectrum disorders and 22 without (usually siblings) attended each night. One limitation of the research, Doody said, is that they had no medical information on the children, including the severity of their autism.
Doody, who has a child with an autism spectrum disorder, said it would be helpful if more public places had events like this, since parents can struggle to find activities the whole family enjoys -- particularly if they also have kids without autism.
She said the current findings could help community programs develop inclusive activities so kids with autism have more chances to interact with typically developing children.
"Being in a social environment is great for them," Levy said.
Even if your local museum doesn't have a special program, she said, it might have something that would appeal to your child. If he or she likes to look at maps, for instance, a museum or park that has maps scattered throughout might be a good place to start.
SOURCES: Kathy Ralabate Doody, Ph.D., assistant professor, exceptional education, SUNY Buffalo State, Buffalo, New York; Dana Levy, Psy.D., Ph.D., clinical assistant professor, child and adolescent psychiatry, NYU Langone Medical Center, New York City; July 2013, North American Journal of Medicine and Science
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