Autism Speaks Official Blog

We wanted to host a follow-up discussion to our previous Parenthood post, ‘The Void a Therapist Can Leave.’ So much happened in the episode, ‘Do Not Sleep with Your Autistic Nephew’s Therapist,’ we figured we couldn’t settle for just one post!

In this clip, Adam and Crosby are arguing. Pushed beyond his limits, Adam reminds Crosby that Gaby is a behavioral aid because he as Asperger’s. Max appears on the stairs, drawn by all the yellling. He has Asperger’s? What’s Asperger’s?

Have you told your child they have an autism spectrum disorder? If you are on the spectrum, how did you come to find out? What was this experience like? Please share with us your story.

Arkansas House Report: Commission on Women, autism funding (The City Wire)
This week was a great refresher for me as to why I gave up precious time with my family, leisure time with my coffee cartel, working out and all of the other things I did before I committed myself back to public service. Read more.

Mildly autistic an ‘untapped’ pool of work force talent (Maplewood, Minn.)
Temple Grandin wants more autistic people in your workplace. If they don’t become part of the work force, your company will lose out. Read more.

Businesses take part in autism fundraiser (Coshocton, Ohio)
More than 20 businesses come together Sunday afternoon for the Autism Speaks Fundraiser at Hopewell School. Read more.

Missing Oxnard man with autism found in Ventura (Oxnard, Calif.)
Ventura police found an Oxnard man this afternoon who has been missing since Saturday. Read more.

MSU hosts autism awareness symposium (Charleston Daily Mail)
Mountain State University held the first in a three-series symposium on autism to spread awareness and education to the public on the detection, diagnosis and treatment for the developmental disorder. Read more.

This is a guest post by Autism Speaks Board Member Gary Mayerson. Mayerson is the founder of Mayerson & Associates, the first and only law practice in the nation dedicated to representing children and adolescents with autism spectrum disorders.

From its very inception, Autism Speaks has recognized the importance of family support, and the role of the extended family.  Indeed, Autism Speaks was founded by two highly motivated grandparents, Bob and Suzanne Wright.

On February 15, 2011, approximately 150 Boynton Beach grandparents attended a luncheon fundraiser for Autism Speaks, raising more than $10,000 in the process.  They came to listen to Autism Speaks Board Member Gary Mayerson speak about the epidemic-like statistics, and the many ways in which Autism Speaks is addressing the problem.

We wish to thank everyone who attended and, in particular, the following committee members who organized this worthy event:  Gerri Ackerman, Elaine Baranoff, Luba Ditkowitch, Ellen Feller, Harriet Fried, Carolyn Holland, Shirley Meltzer, Mara Lee Nozetz, Rita Rosen, Patty Rosenfeld, Phyllis Spieler, Dee Silverman, Ruth Schwartz, Renee Telsey and Sylvia Zeidman (Gary Mayerson’s mother in law).

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Welcome to this installment of ‘Topic of the Week.’ These topics stem from submissions from our community. If there is anything in particular that you would like to see featured, please contact us!

Are you worried about your child not making progress this summer? How will you keep your child academically engaged during summer? What are extended school year options?

What are your IEP(Individualized Education Program) goals? Do you have a particular set of social and academic goals? Have you or your child reached the goals established? What has your experience been?

*Individual Education Program is a document that spells out you or your child’s needs and how these needs will be met. The IEP describes your child’s strengths and weaknesses, sets goals and objectives, and details how these can be met. It is almost entirely related to how the needs of your child will be met within the context of the school district and within school walls.

For more information click here, to know your child’s rights.

This ‘In Their Own Words’ post is by Tracy Miranda.

I will never forget that day – December 7, 2010. After months of speculation, questions and wonder, it was official. My son was being placed on the Autism Spectrum. There were tears of course; immediately. Not that I have ever experienced it myself, but it reminded me of when people talk about a near-death experience. In an instant, my son’s whole life passed through my head and there were so many unanswered questions. Will he be okay? Will he be bullied? Will he get married? Will people think he’s stupid?  I don’t know. I won’t know until he gets there. I allowed myself to cry for a couple of days and that was it. Tears weren’t going to change anything. I wasn’t crying because of the diagnosis. I was crying because as a mother you want to do everything to ensure that life will be great for your child, and I just couldn’t guarantee that. I couldn’t fix it.

My next priority was to learn.  Boy was that a bit overwhelming. Like others, I was “aware” of autism, but didn’t totally understand it. In his evaluation, the psychologist report had mentioned that he had the potential to be extremely smart, but may be socially awkward. We are huge fans of “The Big Bang Theory” and after reading that my first thought was “oh my gosh we’re raising Sheldon!”

It was nice to be able to laugh at the situation, but research was obviously necessary. After doing an internet search for autism, I felt lost. There were so many websites, books, and blogs I didn’t know where to start. Who was I supposed to believe when the websites contradict each other? I remembered that teachers at my son’s school had done the Autism Speaks Walk that we had donated to, so that’s where I started. I came across a blog submission that brought me to tears. It was a letter entitled “Dear Future,” by Stuart Duncan. It was amazing; exactly what I was feeling. I didn’t know what the future would hold, but I wanted to be in it for my son.

I went to his website and immediately emailed him. I had to tell him how much that letter affected me and what I was going through. I needed someone to hear me that could relate to my situation. It was only the first week and I already found a friend. He answered my questions, put my mind at ease and introduced me to the amazing community of autism parents on Twitter. Just like a lot of people, I thought that Twitter was for useless facts about your favorite celebrities. I could not have been more wrong. I found parents just like me who were there to support each other and stick together. When you think that nobody else is going to understand you, someone will. Every time I sent a tweet with a question, I got answers from people who had been there. If I sent an update on something cool that my son did, I received cheers from people who had lived it. They got me. They were me.

My husband and I were taking the news a little different. He kept a lot of his feelings inside to process them while I wanted to share with everyone and start building my support network immediately. Mind you, some of them weren’t sure what to say, but I’m not sure I knew what I needed to hear either.  I did get a lot of people telling me that they knew “so and so” who had a child/grandchild/cousin etc who had autism and they were doing great, so I shouldn’t worry at all. Um, no offense, but that’s just not true. One of the biggest misconceptions about autism is remembering that it is a spectrum and everyone is different. Right now we have no idea what the future will bring.  At that time, I was still trying to process that it was my son; I didn’t care who else was dealing with it. I’m not that insensitive now, mind you, but in the beginning all that mattered was him.

After a couple of weeks when things were starting to get settled it was time for Christmas. I was learning a lot about what to do and what to expect for my son. However, I wanted to know how I could help others. It was shortly after Christmas when I found the answer. My son had received more presents than he actually needed and his birthday was only a few weeks away. Already family and friends were asking “what does he need?” Ummm, nothing. Am I a bad mother for saying that? Am I going to deprive him of presents from loved ones? No, but I wanted to do something better.

We decided to make his birthday have purpose, help others, and allow those that cared about him to do something meaningful. Give a gift that helps lots of kids. Bottom line, my son didn’t need any more “stuff.” I went back to the Autism Speaks website and found the Puzzle Builder fundraiser. I thought it would be perfect! I uploaded pictures of my son and we were ready to go. When I sent out the invitations for his birthday party, I sent a letter to everyone explaining what we were doing and why we were doing it. I got some very positive feedback about our choice. Of course I had to brag about how great our family and friends are and what we did, so I went back to my support system on Twitter.

Imagine my surprise when Autism Speaks answered me back and asked if I wanted to share my story. What??? Me??? Absolutely! So here I am. Our amazing family and friends raised approximately $800 with his puzzles!! That is a LOT of money for my little man’s birthday.  That was far beyond what I would have expected and fills my heart with joy and pride. We made a difference. My son still had a fun party and of course still got some gifts.

I know that the road ahead is still a journey of unanswered questions. However, my son is making great progress. He is very high functioning and doing great in school. I know how lucky I am that he loves affection because many parents of children with autism don’t get to experience that. My heart breaks for them. No matter what lies ahead, my son is the biggest blessing in my life and he makes me laugh everyday.  When people want to feel sorry for me, I remind them how blessed we are. Things could certainly be a lot worse. Autism is what my son has, not who he is.

We will be just fine.

To check out Tracy’s puzzle click here!

For more information about Puzzlebuilder visit here!

“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.

Zev Glassenberg, star of The Amazing Race: Unfinished Business, is a busy guy! When he is not off exploring the globe and participating in a massive scavenger hunt, he finds time for his art. Zev is a talented artist, that uses innovative techniques to create some amazing work. Zev will paint different types of canvas, than use a giant hole-punch to cut out circles. From there, he assembles a mosaic to form different objects. Here are a few to check out!

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‘The Amazing Race:Unfinished Business,’ returns to a cast of familiar faces looking to make good on their mistakes. Tune in on Sunday, 8/7  EST, on CBS.

Catch up with Zev Glassenber and Justin Kanew in our exclusive interview here!

Coshocton mom plans auction to raise funds for autism awareness (Coschocton, Ohio)
Angela Duff counts her blessings for her two healthy children. That is why she wants to be an advocate for parents who might require assistance for children with special needs. Read more.

State moves to dismiss abuse charges against educator (Great Falls, Mont.)
The Cascade County Attorney’s office moved this week to dismiss a felony and misdemeanor charge against the second former North Middle School paraprofessional accused of abusing an autistic student in a special-education classroom. Read more.

Yobics offers workout without high impact, stress (Southern Maryland Newspapers Online)
The house lights are up every Friday afternoon in the theater of Southwinds Active Adult Community in White Plains. Starting around 12:30 p.m. Troy Richardson leads a 30-minute class of residents and community members in a series of stretching and weightlifting without leaving their seats. Read more.

Startup Is Looking For People With Asperger’s To Test Software (Business Insider)
Aspiritech is a Chicago-based non-profit startup whose mission is to “align the unique abilities of individuals with Asperger’s syndrome and high functioning autism with the needs of the business community.” Read more.

College Students Support Autism Programs Through Charity Fashion Show (Middlesex County, N.J.)
Berkeley College students recently hosted the Fifth Annual Charity Fashion Show in support of autism awareness and programs. More than 50 students planned the event, arranged fashion collections and served as runway models, raising $3,100 for the charity through their efforts. Read more.

On Wednesday, February 23, Autism Speaks Co-founder Suzanne Wright and Palm Beach Civic Advocate Eileen Burns were presented with the 2011 Woman of Distinction Award at the Breakers Club in Palm Beach Florida.  Click here to read the full article.

Lindt Partners with Autism Speaks for Third Year; Expands Easter Giveback Program (Stratham, N.H.)
Premium Swiss chocolatier, Lindt today announces their partnership with Autism Speaks for a third year to raise funds for the autism cause during the Easter season.  As a cornerstone of the partnership, Lindt will again support the non-profit through donations from sales of the iconic Lindt Gold Bunny.  Additional funds for Autism Speaks will be raised through the second annual Lindt Gold Bunny Celebrity Auction, Lindt Easter e-cards, and a new Lindt Facebook initiative. Read more.

Coping With Autism in New Jersey’s Budget (Daily Finance)
Last year, New Jersey Gov. Chris Christie pledged himself a supporter of autism services. “You have an advocate for your issues in the governor’s office and I am that advocate,” he told members of Autism NJ, a nonprofit that provides services for children and adults with autism spectrum disorders in New Jersey. Read more.

At the Boston Conservatory, autistic students learn from music lessons (Boston.com)
The Boston Conservatory is renowned for its intensive training in the performing arts, but on Saturday mornings, this Fenway institution offers a unique program: providing music lessons to children and young adults with autism. Read more.

Foothill High senior is the picture of victory over autism (Foothill, Nev.)
Foothill High School senior Ben Nelson is a precocious artist who meticulously draws colorful illustrations that look like they came straight out of a Disney-Pixar movie. Read more.

Your comments: Newark airport program helps autistic children cope with air travel (nj.com)
Five families participated Wednesday in the “Autism Explores” at Newark Airport, The Star-Ledger reported. It’s a program designed to help autistic kids and their families learn to cope with the particular strangeness of air travel today, an environment that often triggers some high levels of discomfort and outbursts in autistic children. New Jersey has one of the highest rates of autism in the U.S., and Sen. Frank Lautenberg (D-N.J.) was instrumental in bringing the program, which has its roots in Philadelphia, to Newark Airport. Read more.

This is a guest blog post by Dr. Paul T. Shattuck. Dr. Shattuck is a national expert on disabilities, specifically autism. He has published a number of articles on the prevalence and course of autism as well as on policies and services for people with autism and their families.

Do the challenges of having an autism spectrum disorder (ASD) and the needs for special supports magically disappear in adolescence? No! But many families are pushed off a cliff when it comes to accessing needed services for their young adults with an ASD.

My team and I used data from a large national survey to look at the use of diagnostic medical services, mental health services, case management, and speech therapy during the first few years after leaving high school. In a report published this month in the Archives of Pediatrics and Adolescent Medicine, we found that overall rates of service use were 23.5 percent for medical services, 35 percent for mental health services, 41.9 percent for case management, and 9.1 percent for speech therapy. This compares with higher rates of service use while in high school: 46.2 percent received mental health services, 46.9 percent had medical services, 74.6 percent were getting speech therapy, and 63.6 percent had a case manager.

We also found that 39.1 percent were completely without all four of these essential supportive services. African-American youths and those from poorer households were at much higher risk for this total lack of services.

I was especially troubled by the low rate of accessing speech therapy. Youths with an ASD are especially vulnerable during this period because of their core challenges with communication and social interaction. Succeeding at a job, at school, or in the community depends on being able to communicate with other people. Speech therapy can help with these issues. But many insurance plans and state programs for vocational support or serving adults with developmental disabilities do not reimburse for speech therapy. Building in speech therapy as an eligible expense in adult-serving programs should be an immediate priority for policy improvement.

Why did I ask these questions? Many people who have, or work with, young people who have special needs already know that services drop off after high school. But there are many people and policy makers who have no clue about how dysfunctional these policies are. This study adds hard facts that can be used to educate and raise awareness about how the current system (mal)functions.

The majority of a typical lifespan is spent in adulthood. Yet the majority of what we know about ASDs is based on a lot of research focusing on very young children. I pursued these questions as part of a broader research mission aimed at understanding how to improve life for people with an ASD and their families across the lifespan. Autism Speaks, the Organization for Autism Research, and the National Institute of Mental Health have generously supported this ambitious agenda. I look forward to giving you more updates in the years ahead as we begin to build a stronger evidence base for helping adults with an ASD and their families have brighter futures.

Here is a link to the Autism Speaks Transition Tool Kit, to serve as a guide to assist families on the journey from adolescence to adulthood.

Family Services provides resources and information. If you have a question, contact the Autism Response Team today. If you’re concerned that your child may be affected with autism or if you’ve received a diagnosis, browse the Tools for Families section, where you’ll find our 100 Day Kit, and the Autism Video Glossary. If you’d like to do a quick search for service providers near you, select Find a Local Resource and browse the Resource Guide.