This post is by Lisa Goring, Autism Speaks’ director of family services. Lisa lives in Manhasset, New York with her husband Paul and two children, Lindsey and Andrew.
“Your child has autism.” 11 years ago this month, I heard those words, and it felt as if everything stood still. The pediatric neurologist kept on talking, but I honestly don’t remember a word that she said. Autism?
And so like many parents before me and after me, our journey began. I called early intervention; I called therapists; I went on websites (there weren’t that many 11 years ago) to help my son Andrew. I wasn’t even sure what I was asking for – what exactly are ABA, occupational therapy and speech therapy? I had a lot to learn, and I needed to learn quickly – this affected my child!
11 years later, I have learned quite a bit. As the director of family services at Autism Speaks, as well as being a parent of a child with autism, I know how critical those first few months after a diagnosis can be. I also know how lost and isolated some families can feel. And I am so proud that we, at Autism Speaks, are able to provide families with the 100 Day Kit.
In working on the 100 Day Kit we wanted to make sure that we received input from parents of children with autism as well as autism professionals. When we were putting together the advisory committee for the original 100 Day Kit, we consulted with professionals that are clinically strong, but also those that understand the needs of the families. Those that believe in children with autism, and all that they can achieve. We thought it was important to be able to provide newly diagnosed families with access to the work of these professionals through this kit.
We also knew how much newly diagnosed families could learn from other parents of children with autism. I was always so grateful to the parents of children with autism who I reached out to. They would share their time, experiences, knowledge and resources and truly understood the challenges. And so we knew it was important to get the perspective of parents of children with autism as we developed this kit. We made sure that we included information from our parent advisory committee. We asked them to let us know what was helpful when they first got the diagnosis. What did they wish that someone had told them? And so we took their input and incorporated that into the 100 Day Kit.
I am so appreciative of the professionals and the parents of children with autism that were able to contribute to this kit and even more proud that we are launching Version 2.0. This new version incorporates so many amazing suggestions and comments we have received since we first launched the original kit. It reflects, even more than the original, the great advice that parents “who have been there” have shared. Every 20 minutes, a child is diagnosed with autism. When families first get the diagnosis of autism, it can be difficult. Our hope is that the new 100 Day Kit will provide families with a greater sense of hope, with resources, and information that will help make those first few months just a little bit easier.
This week’s “In Their Own Words” is the testimony of 10-year-old Ellie Simon, the sister of Danny Simon who has autism. Last week, Ellie spoke before the HGO Committee, testifying in support of HB 1091, Maryland’s autism insurance reform bill. Her dad, Joel, is one of Autism Speaks’ Maryland Advocacy Chairs.
Hi, my name is Elizabeth Gordon Simon. I am 10 years old and I am in the fourth grade. I live in Baltimore County and I am here to ask you to support the autism insurance bill. The reason this bill is important to me is because I have a little brother with autism. His name is Danny.
ABA is Applied Behavior Analysis. I don’t really know what Applied Behavior Analysis means but I do know it helped my brother a lot. Before ABA, Danny was always yelling and he would bang his head on the floor. Now he plays with me like a regular brother and goes to a regular school with regular kids. I remember when therapists first came to the house they would ask me to play with Danny. I really didn’t know why at the time but now I know that I was helping him.
Danny sneaks into my room, like any other brother would. Unfortunately, there’s no therapy for that. Danny loves to play Wii and loves to tell jokes. He hates eating fruits and vegetables.
I may not understand all that the grownups talk about but I do understand that my brother is extremely smart. We never would have known how smart he was if he didn’t have ABA therapy because it taught him how to communicate.
I believe that other children deserve the same intervention. My family spent a lot of money on Danny’s ABA therapy. Most people cannot afford to pay what we paid for Danny’s ABA. That’s why I think we should support the autism insurance bill, so other kids with autism can learn to communicate just like Danny did.
If you have a story you wish to share about your personal experience with autism, please send it to firstname.lastname@example.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.
Wendy Going noticed her son Kegan had a natural inclination toward animals. Read more.
Scout group welcomes youths with special needs (San Diego, Calif.)
Before joining his Boy Scout troop, one member attempted suicide. Others found they didn’t fit in with Scouts elsewhere because of behavioral issues. Read more.
Family shares experiences, struggles of autistic child (Santa Maria, Calif.)
Candyce and Eddie Estave spent some frustrating years trying to determine what was causing the screaming spells, detachment and other “negative behavior” of their son, Eddie, now 7. Read more.
Student restraint measure stalls (Milwaukee, Wis.)Facing opposition from school administrators and teachers, the prospects for legislation to limit when Wisconsin students could be physically restrained or secluded in time-out rooms appear to be fizzling out in the state capitol. Read more.
Autism bill goes to Senate (Topeka, Kan.)
The Kansas Senate on Thursday is expected to take up a bill that would set the stage for expanding coverage of autism treatments in Kansas. Read more.
Walk Now for Autism Speaks to benefit Treasure Coast families (Stuart, Fla.)
Like any other 10-year-old, Hunter Ann Holliday runs through her house, doll in hand, and begs to go to the park, or out for french fries. Read more.
Families struggling to cope with the financial burden of autistic children could get hit with a crippling tax on the expensive therapy their kids need, New Democratic Party Leader Andrea Horwath said Tuesday. Read more.
Making quirky cool: Club for kids with Asperger’s inspires new parenting book (Carlsbad, Calif.)
Beth Wagner Brust knows there are few things more difficult than watching your child struggle to make friends. Her youngest son, Ben, was diagnosed with ADHD in kindergarten, but by third grade he still didn’t have any friends. Read more.
House Approves Autism Insurance Measure (Ky.)
The Kentucky House has approved legislation requiring insurance companies to pick up some of the high costs of treating autistic children. Read more.
Parents want better support for autistic children in schools (Canada)
Some parents in Manitoba say standardized training is needed in schools to ensure staff members are able to help children with autism. Read more.
UCONN 5k Run For Autism Speaks (Hartford, Conn.)
On Saturday, April 3, the Tau Kappa Epsilon Autism Speaks U 5K Race/Walk presented by Tau Kappa Epsilon Fraternity will take place at the University of Connecticut. Register now to be part of the excitement on April 3. Read more.
I have an autism spectrum disorder – Asperger’s Syndrome – and I’m good with that. I have a passion for science and technology. My parents allowed me to focus on my passions, and did not force me to be “well-rounded.” My favorite book as a child was “How Things Work.” I was lucky to have teachers who motivated me with real life problems and hands-on projects (I attended public school, private school and was homeschooled for junior high and high school.) My mom gave me old electronics to take apart. Because of an opportunity to learn through real life activities, I felt well prepared when I began a NASA internship last summer.
Thanks to the American Association for the Advancement Science (AAAS) I was able to get an internship with NASA. I did computer programming for rocket engines. When I arrived at NASA, I shared a Powerpoint presentation with my team and my supervisors, explaining how Asperger’s impacts my life and how it could impact my work. I provided the list below, explaining to them what I needed in order to be successful, and in turn, what I would deliver when I had this support.
What I Need
* Understanding of my timing
* Help to prioritize assignments
* Understanding of my prosopagnosia (face blindness)
* Photographs and names of team members
* Patience as I learn names and faces
* Understanding of my episodic memory
* Wait time for oral responses
* Understand my difficulty to recall details of events
What I Will Deliver:
* Ability to focus intensely
* Team player
* Lack of involvement in “office politics”
* Critical thinking
* Problem solving
* Thorough results
My NASA teammates were very supportive and I had an excellent experience. The 10 weeks of independence as an intern gave me hope that I can one day live on my own. Research conducted in Great Britain in 2001 suggests that only approximately 3% of those with Asperger’s Syndrome will live independently. Those are pretty tough odds, but I am determined to be one of the 3%.
People sometimes ask me if I wished I did not have a disability. I’ll be perfectly honest, at times it is very difficult, and sometimes I feel very alone. While autism may be an explanation for how I act or the decisions I make, it is never an excuse. It is my responsibility to learn ways to live in a neurotypical world. (It certainly helps when others will meet me partway.) If I were to answer the question about having autism, the answer is no, I don’t wish that I were neurotypical. When I stop and think about it, autism is a part of who I am, and I like being me.
This guest post is by Peter Bell, executive vice president for programs and services at Autism Speaks. Peter and his wife, Liz, reside in New Jersey with their three children. Their eldest son, Tyler, has autism.
When I was a college student back in the 80’s, a big part of my learning experience occurred outside the classroom. That’s because much of my time was spent participating in a fraternity. Yes, we had parties and enjoyed the camaraderie that comes with belonging to a brotherhood. But my involvement in the Greek system taught me a lot about leadership (I was an officer every year), community service (we held successful fundraisers for charities) and the importance of teamwork (our motto was “all for one, one for all”). To this day, the bonds I formed with those brothers have endured and they remain some of my closest friends.
When it became obvious that my son Tyler, who has autism, was not on a path towards college, I mourned the loss of an experience that had a profound impact on me during my formative years. Joining a fraternity helped shape me in many ways, equipped me with life lessons and afforded me friendships that would last a lifetime. If Tyler wasn’t destined for college and he didn’t have an opportunity to belong to something like a fraternity, how would this impact his future?
Thanks to the members of Theta Delta Chi Fraternity at Rutgers University in New Brunswick, New Jersey, Tyler is now getting a chance to experience these benefits first-hand. For the past six weeks, Tyler, who turned 17 in January, has been participating in a pilot mentoring program that was created to offer a positive social experience for teenage boys with autism. The program is named BrosUniteD, or B.U.D., in recognition of the TDX motto “our hearts are united.” The concept involves pairing each participant (eight boys between the ages of 13-19) with up to three big brothers from the fraternity who are there to support, encourage and get to know them. Each week, the groups participate in a structured activity that allows for lots of fun, meaningful friendships and safety. Activities included bowling, ice skating, rock wall climbing, and hiking. The six-week pilot program took place on or near the Rutgers campus on Sunday afternoons. The program culminated last Sunday with a special ceremony featuring dinner, awards and a paddle presentation.
The benefits of the B.U.D. program were obvious from the start. The little bros immediately felt accepted and valued by their big bros. They got to practice their social skills without the fear of fitting in or being teased. The activities were fun and specifically designed to encourage meaningful interaction and the opportunity to bond. In some cases, like ice skating, the playing field was leveled and the little bros got to show off their talents and best their big bros! Some of the boys communicated their positive experiences with statements such as “I like going to Rutgers fraternity,” while others demonstrated their enthusiasm for the program through their actions and body language including lots of smiles and laughter.
Equally important were the benefits to the brothers of TDX. This chapter had previously participated in our central New Jersey Walk and successfully raised substantial money and awareness for Autism Speaks. However, the opportunity to have direct contact with these teenage boys with autism was an extremely rewarding experience for them. Before the program started, they went through a two-hour training session conducted by a local autism consultant and Autism Speaks representatives. They also got to witness autism in its many forms and learned about not only the challenges but also the extraordinary gifts and talents of each of these young men. As a result, some of the TDX guys are now interested in careers that involve autism.
One of the objectives of BrosUniteD was to develop a program that could be replicated to other TDX chapters across the country (currently, there are 29 chapters in the U.S.). With the number of teen boys with autism rapidly rising, there’s no question that there’s a significant need for positive male role models for this population. I want to personally thank the young men from Theta Delta Chi at Rutgers for their enthusiastic participation in this program and for caring enough to make B.U.D. such an incredible experience for Tyler (and his dad).
For more information about the program and to see photos of the activities, please visit the BrosUnited Fan Page on Facebook.
Researchers say the best autism research is conducted after someone dies. That requires donating the brain. In our final segment of our series Autism through the Lifespan, Erika Beras reports on The Autism Tissue Program. Read more.
Grant will benefit kids with autism (Dubuque, Iowa)
Children with a type of autism, called Asperger’s syndrome will get some help, thanks to the Walmart State Giving Program. Read more.
Special-education stimulus funds diverted to other costs in Monmouth and Ocean counties (N.J.)
Kim Vaccaro of Brick wasn’t aware that last year’s federal stimulus package included a $2.4 million grant to help her district enhance its special education program. Read more.
Proposed budget cut targets aid to families with special needs members (S.C.)
The Florence County Disabilities and Special Needs Board serves more than 1,000 people. The proposed budget cut of 28 percent last month by the S.C. House of Representative Ways and Means Committee would reduce services to strictly residential, cutting less than 150 people in the county. Read more.
Vaccines Win Again (WSJ.com)
Few medical scare campaigns have done as much harm as the one claiming to link autism to vaccines for children. So parents and doctors alike should welcome the latest emphatic ruling by a special Washington court dismissing such allegations. Read more.
Palm Beach Civic Association names Bob Wright new CEO (Palm Beach, Fla.)
Former NBC executive Bob Wright has been selected as the new chairman and CEO of the Palm Beach Civic Association. Read more.
Mother on sex attack at school (Miami Gardens, Fla.)
A parent is speaking out about the pain her young daughter and family have endured since an alleged sexual attack on her daughter at a South Florida elementary school. Read more.
Siblings of Kids With Autism May Be Prone to Hyperactivity (HealthDay News)
Older brothers and sisters of preschool children with autism may be at increased risk of developing hyperactivity, a new study finds. Read more.
South Carolina lawmakers will discuss a measure to avoid all cuts in health and medical programs. Read more.
Boy incompetent to stand trial (Baraboo, Wis.)
Juvenile murder defendant Michael Crisafulli is not competent to stand trial due to his autism and should be sent for an indefinite period of mental health treatment, a Sauk County judge ruled Thursday. The judge reserved the option to bring the 13-year-old boy back for criminal prosecution if an improvement in his ability to comprehend court proceedings and assist his defense team warrants the change. Read more.
Newer Genetic Test for Autism More Effective (HealthDay News)
A newer type of genetic test is better at detecting abnormalities that predispose a child to autism than standard genetic tests, new research has determined. Read more.
U.S. Court Rules Again Against Vaccine-Autism Claims (FOX News)
Vaccines that contain a mercury-based preservative called thimerosal cannot cause autism on their own, a special U.S. court ruled on Friday, dealing one more blow to parents seeking to blame vaccines for their children’s illness. Read more.
In Ending a Slump, Els Merges Past and Present (NYT.com)
Every time things became tight Sunday — and there were several — Ernie Els did what he used to do back when the living was easy and he was a dominant player in his 20s and his 30s, winning tournaments and hoisting trophies around the world. He gathered himself, summoned the resolve that defined him and did what had to be done to win. Read more.
Chesapeake, parents wrangle over who should pay for school (Chesapeake, Va.)
The teenage girl with glasses and wavy hair settles into her seat at the head of a rectangular table. It’s an important day, so she’s wearing her dress with the black velvet bodice and shiny red skirt. Read more.
New housing complex in works for those with Asperger’s syndrome (Minneapolis, Minn.)
A select group of students may find it harder than most to adjust to the noises, scents and social scene of dorm life, but a planned housing development in Prospect Park will provide them with a more comfortable environment. Read more.
Fire Safety Book Designed For Kids With Autism (Quincy, Mass.)
A new, interactive fire safety book has been designed to help children with autism spectrum disorder respond appropriately to the sound of a smoke alarm. Read more.
Finding appropriate treatments for autism is a challenge for families and clinicians alike. While behavioral treatments are an effective mainstay of therapeutic approaches, many individuals with autism benefit from the addition of medicinal interventions, particularly for problem behaviors, severe self-injury, and disruptive repetitive behaviors. A major impediment to finding effective treatment regimens is the fact that individual responses to the same medicine can vary greatly due to genetic background. Finding the most effective dose with the fewest side effects means slowly trying various doses, and possibly having to switch medicines. This is not only a challenge for the physician, but is also a confounding factor in large-scale clinical trials that aim to determine the overall effectiveness of a medication.
Personalized medicine, an approach that customizes medical care using information about an individual’s genetic, proteomic (proteins) or metabolic, profile provides an integrated approach to better identify treatments appropriate to an individual’s needs without going through an extensive period of trial and error. Pharmacogenetics is one methodology that uses an individual’s genetic profile to determine a person’s potential responsiveness to a medication and the likelihood of an adverse response.
Two recent pharmacogenetic studies of commonly used medications in autism indicate that genetic profiles may hold promise in identifying those who would respond well and those likely to have side-effects. A study by a team in Portugal examined how variations in eight candidate genes may help estimate levels of improvement with the use of risperidone and those most at risk for increased weight gain – a problematic side effect of this treatment. Risperidone is an atypical anti-psychotic and one of two drugs with a specific indication to treat irritability and maladaptive behaviors associated with autism. These eight genes are key in the biological systems involved in drug metabolism (how the body uses the drug) and pharmacodynamics (what the drug does to the body). Four gene variations (called polymorphisms) were found to be predictive of clinical improvement. Two others were indicative of those at risk of increased weight gain. Another study, by a team at the University of Illinois, Chicago, examined genes applicable to the drug Escitalopram, which belongs to the class of drugs called selective serotonin reuptake inhibitors (SSRIs). SSRIs have been indicated in clinical practice and smaller clinical trials as effective treatments for repetitive behaviors; larger clinical trials, however, have not demonstrated positive effect, potentially due to individual differences within the study group. This study looked at genetic variations of a serotonin gene involved with the specific targets of the SSRI medications. The researchers found that one variation was associated with a smaller reduction in irritability scores.
These studies are among the few pharmacogenetic studies that have been conducted for autism, and additional larger scale studies are needed to confirm these findings. Nonetheless, these studies confirm the potential for pharmacogenetics to refine research approaches to treatment trials in ASD. This research is an important first step for developing more personalized treatments for individuals with autism.
Owley et al. (2009) A pharmacogenetic study of Escialopram in Autism Spectrum Disorders. Autism Research. 2: 1-7.
Correia, CT et al. (2009). Pharmacogenetics of risperidone therapy in autism: association analysis of eight candidate genes with drug efficacy and adverse drug reactions. Pharmacogenomics J. Dec 8. doi: 10.1038/tpj.2009.63
Okay kids – I haven’t been this excited to watch “The Apprentice” since Randal Pinkett won season four. On that season’s finale, Autism Speaks was the featured charity for Randal and his team. They had to host a celebrity softball game out in Coney Island. It rained, the game got postponed, and Randal beat out Rebecca and her bad ankle to win the task. I got to bring my mom and meet Donald Trump – she is still talking about it today. It was also the first time Autism Speaks got national exposure on a prime time show. (Deep down inside I have a soft spot for Mark Burnett and all things “Apprentice.”)
Now let’s talk about this season:
Let’s just say that they word “celebrity” is used very loosely when it comes to some of this year’s contestants. I know who Sharon Osbourne, Holly Robinson Peete, Cyndi Lauper, Sinbad, and Bret “Rock of Love” Michaels are, but who the heck are Selita Ebanks and Curtis Stone? Even though I have never seen them in Entertainment Weekly, I will say they both are some fine looking eye candy.
The other thing I found a bit alarming was all the cursing, especially from The Donald. Has he been hanging with Snooki and The Situation down at the Jersey Shore? C’mon, Mr. Trump, is this how you make your show edgy? Does every other word have to be a BLEEP and a BLEEP? (Just make things interesting and the rest will follow.)
If you’ve got this on DVR, good for you – because it certainly isn’t worth the two hours NBC carved out for it on Sunday night. “The Apprentice” works best when it’s an hour-long show. In the first episode, the men and women are separated into teams and asked to choose each others project manager. Drama ensues …
In addition to choosing the opposite team’s project manager, they must run a diner and try and make the most money, including tips. Oh, and the other thing they need to do is come up with a name for their team. How very Survivor.
The woman pick the guy with the least amount of sleep, Bret Michaels, who just got back from doing a gig in Mexico and looks like he just got off his love bus. “Tenacity” is the team name chosen by the women.
The men pick Cyndi Lauper. They pick Cyndi because they think she is crazy and they are hoping that she will irk the ladies’ team. They aren’t that far off. “Rock Solid” is the name the guys pick for their team. Air guitar anyone?
Now for the task …
Each team gets to run a Burger Heaven. Burp. The ladies get the better location on 62nd and Lexington and the guys get the one over at 53rd and Madison.
They guys quickly discuss who is going to do what. Bret is out of his league, but has an ace in the hole with Curtis Stone (the hottie chef I never heard of.) The men’s menu has got some high-priced menu items and “food, fundraising and focus” is the motto over at team Rock Solid.
Cyndi and team Tenacity are getting things cooking over at the Lexington location. The gals pull in the paparazzi to take some pictures of Sharon and Cyndi. Cyndi thinks she looks fat in all of the pictures, and Sharon thinks that she is totally barking mad! Holly is calling in all her friends, including the gang over at Autism Speaks, to show up and order some burgers. The Victoria Secret model gets kitchen duties with the other woman I have no idea who the heck is. Carol Leifer wants to serve strawberries with the burgers, so if you watch any reality TV you’ll soon know where this is going.
It’s burger time.
As each team gets ready to grill some burgers, Mr. Trump sends out Joan Rivers to be his secret spy, so he can get the dish on what team is doing what. Is it me or is Joan Rivers looking like one of those mannequins from the Old Navy ads?
First stop for Ms. Rivers is Rock Solid’s Burger Heaven. It didn’t look too good for the guys at first, when all the low rollers started running out of the restaurant once they saw the menu. But by the time Joan and Al Roker got there, the burger listed for 100 bucks was starting to move. It seems that Daryl Strawberry really does have friends in high places. The guys were also getting some Rock Solid tips. Too bad ex-Illinois Governor Rod Blagojevich was taking orders because he left poor Joan’s burger on the counter for 10 minutes. That guy sure likes to talk and Joan was less than pleased.
Over at the Tenacity Burger Heaven, things were moving. The line was stretched around the block and the ladies were a bit overwhelmed. Their menu wasn’t so pricey and they didn’t have as many high rollers coming in. But Joan did like their burger and service better than the guys. Spotted at the restaurant were Autism Speaks’ very own Christina, Denise and Melissa. (One piece of advice to Melissa – next time you are being filmed for a hit reality show ditch the CrackBerry.)
And the winner is … (major spoiler ahead)
Joan loves the ladies’ burger better and tells The Donald, he gives the ladies an extra $10,000 for their kitty, but it’s not enough. Team Rock Solid grills them by raising over $57,000, while Team Tenacity comes up way short with $39,559 dollars, even with Joan’s extra cash. You know what that means. Crazy Cyndi and the gals are going to the boardroom. Before we get all the in-fighting they interview Holly. She is seen wearing the Autism Speaks pin, which is way cool. Go Holly!
None of the gals want to see anyone go home and Cyndi is having a hard time firing anybody. Donald is laying into them hard and as they start to crack, the team turns on Carl “Strawberry” Leifer. MEOW! Mr. Trump asks Cyndi to pick two people to come into the boardroom. She can’t, so he fires Carol right there on the spot. Boom bam. The guys are having a really good time watching in the other room.
I’m digging the new show, especially seeing Cyndi, Sharon and our friend Holly. Let’s hope the gals can pull it together and that Mr. Burnett and NBC keep this show to an hour instead of the blotted two. Sometimes less is so much more.
Next week: Bret wears a different Christian Audigier t-shirt but the same eyesore cowboy hat.
Would you like to be next week’s guest blogger? Send your recap of “Celebrity Apprentice” to email@example.com, prior to 8 a.m. next Monday. We will select our favorite for posting here.
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