Walk Now For Autism Speaks Blog | Autism Speaks

An Afternoon with Temple Grandin

alison.dyer — Tue, 21 May 2013 00:23:54 +0000

On May 16th I had the pleasure of meeting Temple Grandin; you know THE Temple Grandin.

This blog post is by Ali Dyer, the Social Marketing Manager at Autism Speaks.

On May 16^th I had the pleasure of meeting Temple Grandin; you know THE Temple Grandin. She agreed to host a live chat with us discussing her new book, The Autistic Brain, and I was thrilled.

I have to say though, I was nervous. As many of you will agree, Temple is among the biggest autism ‘celebrities.’ I admire her in so many ways. She had the drive to be educated and to work in a time when women weren’t always encouraged to do so. Temple also faced many challenges that stemmed from having autism, but rather than retreat and give-in, she faced them head on and had the will to succeed. Like come on, the squeeze machine?!?! Brilliant.

My family and I often find ourselves going back to HBO’s original film Temple Grandin when we talk about my brother. I thought that I understood how Jeff sees the world, but after viewing the film it really came to life for me. I’m no movie critic, but it is a must see!

Temple is one of the best resources the autism community has and to be able to sit side-by-side with her was a total honor. When we finished up, Temple told me that she wanted to come back and do more – I am going to hold her to it!!

Below is our chat transcript

<a href="http://www.coveritlive.com/mobile.php/option=com_mobile/task=viewaltcast/altcast_code=da74a096c1" >Live Chat With Temple Grandin</a>

You can purchase 'The Autistic Brain' here!

A Life-Long Dream Fulfilled

alison.dyer — Fri, 17 May 2013 21:50:30 +0000

What does a person say when a lifelong dream is fulfilled?

This post is written by Aaron Likens from St. Louis, Mo. Likens is the author of “Finding Kansas: Decoding the Enigma of Asperger’s Syndrome.” To find out more, check out his blog here.

What does a person say when a lifelong dream is fulfilled? That’s the question I’ve been trying to answer after my experience on Monday at the Indianapolis Motor Speedway.

When I was young, I grew up just a few miles from the Speedway. I had a few drivers I liked, but my true hero was Duane Sweeney who was the flagman. My special interest, or “Kansas” as I like to call it, was the Indy 500 and the flagman who worked it. I’d watch and re-watch the start and finish of the race just so I could see Duane waive the flags.

My dad was a pastor and had a church near the track and one of his members worked at USAC which sanctioned the race at the time. He asked her if she could get me an autograph from Duane. Duane, learning he had a fan, gave me his autograph, but it was on the checkered flag he was going to use for the 1990 Indianapolis 500. My mom has photos of that day but I don’t need any to remember the gigantic grin on my face that day. I waived that flag for hours that day, and many days thereafter, dreaming of a chance to do that at the Speedway for the Indy 500.

Years went by and when we moved to St. Louis I started racing go-karts. At the club I raced at there was this flagman who was around 80 years old and he was starting to lose his vision. I volunteered to become the assistant and I would hand him the right colored flags for him to display. A year later he retired and I became the club’s flagman at the age of 13!

Several years later it looked as if a racing career was going to take off (I had NASCAR or Indycar aspirations) but it didn’t. However, I continued to flag for the local kart club as well as a regional series.

In 2003 I was diagnosed with Asperger’s and, after getting some awful information on the Internet, I wanted to give up. The only thing I looked forward to was the weekends and the time spent with flags in hand working at a racetrack with the dream, still, of someday flagging at Indianapolis.

In 2008 I became the flagman of the world’s largest kart race, The SKUSA SuperNats and in 2010 I became the series flagman for the USAC .25 midget series as well as the SKUSA Pro Tour. Both series had me traveling the country working races and still the dream was the same; Indianapolis.

Last year I filmed a video blog from the flag stand at Indy the day before the Indy 500 and one of the staff there heard my story about flagging, Asperger’s, and the story of my flag and he said, “Aaron, let’s stay in touch because we may just want you to be an honorary starter for one of the days of practice next year.”

We did stay in touch and I got the chance to be an honorary starter this year. It was on Monday and getting to the track that day, well, I’ve never been more nervous to be at a racetrack. I always get chills entering the hallowed grounds of the Indianapolis Motor Speedway, but on Monday I was almost sick to my stomach. I knew I was about to live out a dream and, above all else, I had this constant voice tell me, “don’t drop the flag… don’t drop the flag…”

The noon hour came and I was on the special stand that the honorary starter stands on. A few minutes passed and JR Hildebrand took to the track. It seemed like an hour from the time he left the pits to the time I saw this blur of color and speed exit turn four. I held my breath as I realized just what the next six seconds would mean for me.

I raised the green flag in the air and held it aloft. There’s a picture of this and I have the most serious look on my face, as if I was unhappy, but this is the way I flag. JR neared the finish line and I unleashed the flag in a flurry of movement and JR flashed pass in excess of 200 mph and left in his wake one of the biggest smiles I’ve ever had.

And just like that my duties at the Speedway were done; a lifelong dream was fulfilled. I always had the dream but I never imagined that I would get a chance to be a part of an event I have been obsessed with my entire life.

So I still have to ask, what am I supposed to say, or feel, after doing such a thing? I’m not sure, but perhaps I’m not supposed to say anything. Perhaps it is the smile I displayed after the car flashed by that says it all. That, and the continuing gratitude I have for Duane Sweeney who gave me one of his most cherished possessions that laid the groundwork for myself living a dream.

Photo By Chris Jones, IMS

5 Easy Ways to Stay Involved with Autism Speaks after Graduation

Jaclyn Renner — Wed, 15 May 2013 15:47:35 +0000

Whatever your post-graduate plans are, you can continue to stay involved with our college program, Autism Speaks U, and Autism Speaks!

Congratulations graduates! You’re likely traveling the world, preparing to start your first job and/or gearing up for graduate school. Whatever your post-graduate plans are, you can continue to stay involved with our college program, Autism Speaks U, and Autism Speaks!

Here are five easy ways that you can stay involved and make a difference:

Continue to support your campus’ efforts with Autism Speaks U. Stay connected to the campus' chapter leaders and event organizers. You can support your alma mater’s efforts by attending their Autism Speaks U events, contributing to their fundraising efforts and/or asking your employer to sponsor their events.
Participate in a Walk Now for Autism Speaks event! Volunteer, join a Walk Now for Autism Speaks Committee, start a team with other alumni, or help distribute materials to the local community! Click here to find a walk near you.
Join or establish an Autism Speaks to Young Professional (AS2YP) group. Work with the local Autism Speaks staff to join and/or create an AS2YP Committee and put on events for rising executives and professionals ages 21-40. We currently have groups in Chicago, Dallas, Washington D.C. and NYC!
Register on the Autism Speaks U Website. This is a great way to stay up to date on the latest Autism Speaks U news, events and volunteer opportunities. Click here to register.
Subscribe to the Autism Speaks Blog. Stay up to date on current autism news. The blog provides insight and information about the global autism community. Click here to subscribe.

However you choose to stay involved, you will continue to help make a difference in the lives of those touched by autism!

Connect with Autism Speaks U via its website, Facebook and/or Twitter.

SNL's Kenan Thompson Acts as Celebrity Ambassador at BTIG Charity Day

alison.dyer — Tue, 14 May 2013 19:57:06 +0000

BTIG LLC hosted its 11th Commissions for Charity Day featuring celebrity "guest-traders" raising money for children's charities.

Tuesday, May 14, BTIG LLC, a global financial services firm specializing in institutional trading and related brokerage services, hosted its 11th Commissions for Charity Day. The annual Charity Day will once again feature celebrity “guest-traders” on BTIG’s trading floors across the country to help raise money for a variety of children’s charities.

Since it began hosting its Commissions for Charity Day in 2003, BTIG has raised close to $25 million and has donated those proceeds to over 350 nonprofit organizations. This year's annual event will support many organizations that deal with important children's issues, including Autism Speaks.

We are honored that Saturday Night Live’s Kenan Thompson will be representing Autism Speaks. “It has been said that if a person gives you their time, he can give you no more precious gift. Kenan has a full calendar like many of us, but today, took time from his busy schedule to represent Autism Speaks for the event. I hope it inspires other celebrities to give of themselves when opportunities such as these appear in the future,” said Jamitha Fields, VP of Community Affairs.

Among other celebrities that are expected to join BTIG this year are the following: Michael Strahan, Tom Coughlin, Victor Cruz, Justin Tuck, Eli Manning, Joe Girardi, Mark Teixeira, Joe Torre, Reggie Jackson, Rex Ryan, Lynn Swann, Petra Nemcova, Jeremy Roenick, Steve Schrippa, Miss America Mallory Hagan, Hannah Storm and Michael J. Fox.

"We’re proud that our clients and employees have this opportunity to work together with our celebrity traders and other special guests to make such a profound impact on so many peoples’ lives,” said Steven Starker, Co-Founder of BTIG. "The excitement surrounding this year’s event is a strong indication that we will have another successful day. We look forward to being able to support a number of charities that are important to our clients and celebrity guests.”

BTIG Senior Vice President Christopher Dryll & Kenan Thompson

Kenan Thompson with BTIG Co-Founder Steve Starker making a trade

BTIG employees and Kenan Thompson showing their support of Autism Speaks

Kenan Thompson with one of his biggest fans, Liam

NBC’s Bruce Beck interviewing Kenan Thompson about his participation in BTIG Commissions for Charity Day on behalf of Autism Speaks

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About BTIG

BTIG LLC is a premier institutional brokerage and fund services company. BTIG continues to build its global franchise around a broad and experienced group of professionals who are leaders and experts in their respective fields. Founded in 2002, BTIG, including through its affiliates, employs more than 400 professionals in five different countries. BTIG serves customers worldwide and offers services in: Equity Trading, Fixed Income, Futures Trading, Convertible Securities, Equity Derivatives, Prime Brokerage, Outsource Trading, Direct Market Access, Capital Markets, Equity Research and Corporate Access. BTIG has ten domestic offices: New York, San Francisco, Dallas, Boston, Chicago, Los Angeles, Greenwich, Red Bank, Atlanta and Orinda. The firm also has four overseas affiliates: London, Hong Kong, Singapore and Sydney.

Teacher Turned Journalist Reports on Autism in China

Jessica Sachs — Tue, 14 May 2013 14:54:30 +0000

Nick Compton bears witness to Autism Speaks' transformative role in China

Guest post by journalist Nick Compton, of China’s Global Journalism Institute, Tsinghua University, Beijing

Last month, China joined in celebrating World Autism Awareness Day with a stream of media coverage, fundraisers and service projects advancing the causes of our autism community.

Using the benchmark of 1 percent of the population, China is home to some 13 million children and adults affected by autism. According to the China Disabled People’s Federation, it is the nation’s most prevalent brain development disorder. And thanks in part to Autism Speaks, the spotlight on autism spectrum disorder (ASD) in China has never been brighter.

For the past eight months, I have been exploring the depths of autism in China. This has included volunteering at Beijing Stars and Rain, China’s first private autism advocacy organization. There I have interviewed dozens of families, teachers, health-care providers and other specialists. I’ve traveled to autism schools and research centers across the country.

Officially, my project is academic. I’m finishing a master’s degree at Tsinghua University. It is also deeply personal.

Before coming to Beijing, I completed a two-year teaching stint for Teach for America. I worked in a low-income school district in urban New Orleans, where I taught four children on the autism spectrum, ages 3 to 6 years old. All were nonverbal and struggled with basic self-care tasks such as using the restroom.

The tragedy was that these children could have benefited so much if they had access to early and effective autism interventions. But my students came from minority families with little money or access to resources. Poverty’s daily reality proved nearly crushing to these families.

Early intervention – as we’ve discovered – is key to helping individuals on the spectrum lead independent, productive lives. But for lack of access to these opportunities, my students continued to struggle. Theirs was a daily battle amidst the chaos of a public school. I struggled to calm them enough to just sit. How was I going to teach them lasting, valuable life skills?

During this time, I felt immense pressure as their teacher. I read everything I could about autism. I attended workshops with teachers specializing in autism education. I reached out to experts.

Still, I remained profoundly overwhelmed. Even as I worked harder than ever for these kids, their progress came in fits and starts.

In tribute to these kids and countless others like them, I decided to use my experience to highlight the needs of individuals with autism – as well as their loved ones and caretakers – here in China.

Autism's universal truths
I discovered many of autism’s universal truths. No matter where you are, families and caretakers are desperate to help their loved ones learn the skills they’ll need to lead independent, fulfilling lives.

When I was teaching in the U.S., I could see this desperation in parents’ eyes, as they sought my advice on their latest scheme to improve their kid’s condition. They’d use credit cards and borrow money from friends to try specialized diets and supplements, even air filters that supposedly charged the atmosphere with “restorative ions.” If any of these worked, I couldn’t tell. But the energy with which families embraced each far-flung idea, no matter the cost, spoke of their dedication.

In China, I’ve experienced a similar phenomenon. I’ve talked to parents who shell out their life savings to pay for rehabilitation classes for their children. Others look for the magic bullet of a cure through untested herbal supplements or traditional Chinese medicine. One family went so far as to seek stem cell treatment in Hong Kong, at a cost of 100,000 Yuan ($16,000 US). All it produced was a dent in their bank account.

However, I also see several powerful differences at the heart of the autism crisis in China.

When I interview Chinese educators and health professionals, they insist that that autism is a “new” disorder here. Certainly the Chinese scientific community and government are just coming to grips with it. China’s very first autism diagnoses were in the 1980s, versus the 1940s in the U.S.

To be fair, public awareness and understanding of autism in China is growing. Until recent years, it was common here to blame autism on bad parenting or even bad karma. As you can imagine, this produced a paralyzing stigma that forced many families to care for their loved ones quietly at home.

The central government, too, has begun to prioritize autism care. Last November, the Chinese Ministry of Health provided 32 million yuan ($5 million US) in funding for China’s first national survey of autism prevalence. This June, a new Beijing program promises to cover the complete costs of early childhood education for children with autism up to age 6.

These developments are encouraging. Unfortunately, the lives of most individuals with autism remain bleak in China. Part of the reason is a deeply entrenched system that, for the most part, puts quality autism care out of reach for all but the most privileged Chinese.

This begins with the public school system. I’ve lost count of the number of families who told me that their child was turned away from a public school because of his or her autism.

In the U.S., we take for granted the public school mandate to provide a “free and appropriate public education” for all children with special needs. In China, public schools routinely turn down students with disabilities because they don’t have the staff or facilities to accommodate him. True, there are special-education schools in each district. However, they remain geared towards educating the deaf, blind and physically handicapped. Children with autism or other mental disabilities rarely receive adequate services.

Today, hundreds of privately run autism treatment centers are springing up across China. Often, they’re created and run by parents and operate outside of government oversight. The overflowing demand produces long waiting lists and pushes prices out of reach for most. Some centers – such as Beijing Stars and Rain – are rightly famous for their teaching techniques and results. Others appear more geared toward earning a fast buck.

We need government agencies to step in to oversee these schools to ensure quality of instruction and guard against fraud and price gouging. To be sure, there are many challenges to be addressed here in China.

Autism Speaks plays a transformative role
Despite the challenges, there’s reason for hope. As institutions treating and diagnosing autism in China grow in number and sophistication, they are drawing on the expertise and resources of international organizations such as Autism Speaks.Autism Speaks has been a crucial adviser on China’s first national survey of autism prevalence. Its partnership with the Beijing Genome Institute is a source of great national pride.

These projects, combined with increased media attention, continue to raise autism awareness in this vast nation. On World Autism Awareness Day, as buildings in Beijing and Shanghai lit up blue for autism, a group of students stopped me on my way to dinner. I assumed they were pitching a new student club. Then I saw that that they had spread blue glow sticks across the ground in front of them.

“Have you heard of autism?” One of the students asked me? I had, indeed.

Editor’s note: For more on Autism Speaks partnerships in China, please see China Rises to Meet the Global Autism Challenge,” by Andy Shih, PhD, Autism Speaks senior vice president of scientific affairs.

8 Critical Measures to Counter Suicide

Ali Hines — Mon, 13 May 2013 14:31:07 +0000

This post provides tips and information about how to prevent the growing rates of suicide among individuals with autism.

This post is by Autism Speaks board member and Family Services Committee member Sallie Bernard. The tips are excerpted from her article The Other Public Health Crisis from the April-May edition of The Autism File magazine. The article discusses the growing rates of suicide among individuals with autism and focuses on how awareness and action can save a life. You can read a PDF of the entire article here.

1. Pay Attention

Never minimize or trivialize words or actions indicating suicidal thoughts. Ignoring them won't make them go away. Additionally, monitor any changes in behavior, and be aware that such changes can follow head injuries including concussion. Be extra vigilant should your child receive a sports or other injury involving even a mild concussion.

2. Talk About It

Be open and frank with both your ASD and typical children when talking about suicidal thoughts and feelings of depression and anxiety. Don't be afraid to enlist help from a healthcare professional, pastor, educator, therapist, etc.

3. Prevent Bullying

Monitor your child's school or workplace and engage with teachers or employers to ensure any bullying is recognized and eliminated.

4. Reduce Social Isolation

Build social relationships, access community-based activities, and prioritize social skills and peer mentoring.

5. Promote Healthy Lifestyles

Good nutrition, daily exercise, regular sleep, and mindfulness practice go a long way in regulating mood and behaviors. Implement self-empowerment and self-awareness programs which enable your child to better handle life stressors. Meaningful, consistent work also acts as a buffer. Also, be alert for signs of alcohol and drug abuse and be prepared to seek professional assistance if needed.

6. Monitor Medication Side Effects

Some medications used for behavioral or mood problems can increase suicidal ideation. Maintain close dialogue with the prescribing physician if any worrisome symptoms appear.

7. Place Barriers on Lethal Means

If you have concerns or are entering a crisis situation, keep firearms and sharp objects under lock and key. Be aware of any poisons—including medications—in your home that need to be secured. Lock upper story windows and engage child locks on car doors. Remove or prevent access to ropes and cords.

8. Act Quickly

If you recognize suicidal tendencies in an individual with or without an ASD diagnosis, reach out to a professional immediately. Monitor your child closely and constantly until he or she is seen by a professional.

Read the full PDF of Sallie’s article from The Autism File Magazine here.

Click here to read this week's Got Questions?: What's the connection between autism and depression? from Christopher McDougle, MD, director of Massachusetts General Hospital’s Lurie Center for Autism.

Visit the Autism Safety Project website to learn more about keeping your loved ones safe both at home and in the community. This resource also contains information for first responders to help them create a safer environment for and have positive interactions with individuals on the autism spectrum.

What's the connection between autism and depression?

Mon, 13 May 2013 10:00:10 +0000

Perspective from Christopher McDougle, MD, director of Massachusetts General Hospital’s Lurie Center for Autism

This week’s “Got Questions?” answer comes from Christopher McDougle, MD, director of Massachusetts General Hospital’s Lurie Center for Autism, a member of Autism Speaks Autism Treatment Network.

This is an important question. Mood disorders – including depression – do appear to be more common in those with developmental disabilities than in the general population.

However, diagnosing depression in those with autism represents a challenge that dates back to Leo Kanner’s original description of “infantile autism,” in 1943.

Kanner described a disturbance of “affective contact” in those with autism. Clinicians use the term “affect” to describe how someone’s emotional state appears to others. In other words, does the person look depressed or anxious? This can be different from “mood.” Mood refers to how someone actually feels inside.

Affect and mood are not always aligned. For example, someone’s expression may appear flat and register little reaction. However, that person may say that he or she feels fine. Clinicians refer to this as an “incongruence of affect and mood.”

Tackling a Challenging Diagnosis
Many individuals with autism spectrum disorders (ASD) show little facial emotion. This does not necessarily mean they’re depressed! In other words, their affect doesn’t necessarily match how they feel.

However it does make it more difficult to recognize depression in someone with autism. In addition, many individuals with ASD have limited or no speech. So they may not be able to tell us how they feel.

As you can imagine, this makes it challenging to accurately diagnose depression in those with ASD. We can ask about other symptoms that sometimes flag depression. These include changes in appetite or sleep – either increased or decreased. There may be a telltale drop in energy or lost ability to take pleasure in activities that had been enjoyable. This may come with an overall decrease in interests and motivation.

We can measure changes in weight and hours of sleep. Still, it’s difficult to confidently diagnose depression in those who may not be able to convey how they feel in words or appearance.

Another challenge in diagnosing depression in someone with autism is the overlap in symptoms. The symptoms of depression include a flat or depressed affect (facial expression), reduced appetite, sleep disturbance, low energy, reduced motivation, social withdrawal and reduced desire to communicate with others. Clearly, many of these same symptoms can stem from autism rather than depression.

Autism, Depression and Suicidal Tendencies
When discussing the diagnosis and treatment of depression, it’s important to address the possibility of suicidal tendencies. In medical school, psychiatrists learn to assess for risk of suicide in every patient we evaluate for depression. This also applies to the assessment of individuals with ASD.

In a recent study published in the journal Research in Autism Spectrum Disorders, Angela Gorman and colleagues identified a number of risk factors associated with thinking about suicide and suicide attempts in children with ASD. (The study was supported, in part, by a grant from Autism Speaks.)

Through parent interviews, the researchers inquired about 791 children with autism, 186 typically developing children and 35 non-autistic children with diagnosed depression.

The percentage of children rated by their parents as “sometimes” to “very often” contemplating or attempting suicide was 28 times greater for those with autism than those with typical development. It was 3 times less among those with autism than among the non-autistic children who had depression. Depression was also the strongest single predictor of suicidal thoughts or attempts among the children with autism. Fortunately suicidal tendencies were uncommon among children under age 10. (Editor's note: Click here to read "Eight Critical Measures to Counter Suicide," a blog post by Autism Speaks Board Member Sallie Bernard.)

These findings underscore how important it is for clinicians to assess the potential for suicide whenever evaluating adolescents or adults with ASD. Yes, we are challenged in making an accurate diagnosis of depression and suicide risks in individuals with ASD. We need to use all the information available to us for this purpose. This should include direct interaction with and observation of our patients. We need to talk with family members, teachers, job coaches, group home staff and so on.

The Urgent Need for Further Research and Clinical Guidance
We urgently need more research to develop better tools and techniques for diagnosing mood and anxiety disorders in individuals with ASD. This is particularly important for those who have significant communication difficulties. The use of augmentative and alternative communication devices may help.

Moreover, we critically need research that advances the development of effective medications and behavioral treatments for depression with ASD. To date, we don’t have a single published systematic clinical trial of an antidepressant medication for the treatment of depression in individuals with autism. Very likely, the challenge of accurately diagnosing depression in persons with ASD have contributed to this lack of progress. We must redouble our efforts in this critical field of care.

Editor's note: Dr. McDougle will be a featured speaker at Autism Speaks National Conference for Families and Professionals, July 26 and 27. To learn more about conference speakers, workshops and registration, click here.

Got more questions? Send them to GotQuestions@autismspeaks.org. Subscribe to Autism Speaks Science Digest to get “Got Questions?” blogs and all our research news and perspective delivered to your inbox.

Thanks to the passion and support of our families and donors, Autism Speaks is able to fund research with the potential to advance understanding, diagnosis and treatment of depression in those with autism. These current research grants support such work. More is needed!

My Favorite Word is Mama

alison.dyer — Sun, 12 May 2013 15:35:04 +0000

I always wanted to be a mom, and my husband and I were blessed with two beautiful boys.

This post is by Kathleen Lanese.

My favorite word is Mama.

I always wanted to be a mom, and my husband and I were blessed with two beautiful boys. When you first hold that perfect baby in your arms, you have expectations, hopes and dreams for his future. When your child is diagnosed with autism you have to adjust your expectations, change your dreams, and refocus your hopes for your child. But you have to also do that for yourself, and for the parent you thought you’d be. When BOTH of our children were diagnosed - well, let’s just say there’s a lot of adjusting going on in our house. Being Brendan and Kevin’s mom is the best thing that ever happened to me. Autism couldn’t diminish the love or pride I feel for my boys, but it changed what I thought I knew about being a parent.

It is frustrating, heartbreaking, and painful to see your child struggle with the challenges of autism, as our children do, each and every day. As parents we want to help and protect them, and save them from difficulties that nobody should have to endure. When we can’t “make it better” despite exhausting ourselves physically, mentally, and financially – it’s easy to feel like we failed, and let our kids down. I feel it, every day. Most of my autism mom friends do too – despite being the most strong, dedicated, amazing women I’ve ever known. These moms will fight to their last breath to change the world for their children, and help them be successful – one small step at a time. These women are grateful for every milestone and accomplishment (despite, and because of, how long it took to achieve), and treasure every hug, moment of eye contact, affectionate head-butt, and “mama”, if we’re lucky enough to get it. Autism moms make sure our children know that we will always love them just as they are, even as we’re fighting to make them the best they can be; that we are proud of them, always. We adjust our definition (and their definition) of “success”, as we should. But too often we don’t adjust the way we define our own success as mothers. Even if we DO recognize and admire another mom’s parenting skills, we often don’t give ourselves the same credit.

This autism mom thing is hard, but you all do it (and do it well) for your children. It takes strength and courage to face every day ready to go to battle for (and sometimes with) your child. You can take a hit better than a Golden Gloves champ, find that elusive Elmo videotape (yes, I said videotape), and endure 53 replays of the Rugrats theme song – all before breakfast! There isn’t a medal for that, but there should be.

If the saying “the road to motherhood is paved with guilt” is true, then the road of an autism mom is a six lane highway with no exit ramps. It’s Mother’s day, ladies. Find a way to get off the autism guilt super-highway, at least for the day. The Mother’s Day shown on TV commercials (peaceful brunches with fine china, gourmet food, beautiful clothing and classical music) probably won’t resemble Mother’s Day at your house (unbreakable dishes, chicken nuggets, t-shirts and sweat pants (NO TAGS), and an endless loop of Thomas the Tank Engine and SpongeBob). That’s ok, you’re not alone.

This Mother’s Day, I’ll be thinking about how grateful I am for my amazing sons, and the joy and meaning they have brought to my life. I will try to remember that I’m doing the best I can – and I’ll be thinking about all of you other moms who are, too. Our kids might not be able to say “thank you” or “I love you”, but they show us - if you know what to look for. If you get a fabulous Mother’s Day gift, or a fancy meal, good for you – you deserve it! Me? I’m going to be really happy just hearing the word “Mama”. And I’m praying that each and every one of you gets to hear it too, some day.

Moms Bowl for Free. Yes, I Accept Your Invitation!

alison.dyer — Sun, 12 May 2013 14:38:14 +0000

Hunter, my son with autism invited me to go bowling on Sunday for Mother’s Day.

Marianne Sullivan is responsible for Community Outreach and Education at Autism Speaks. She can be reached at: msullivan@autismspeaks.org

Hunter, my son with autism invited me to go bowling on Sunday for Mother’s Day. A local bowling alley offers “Moms Bowl for Free on Mother's Day”, and since bowling is one of his favorite activities, I am looking forward to this Mother’s Day. As every family knows, special days can be tough. We often adjust our expectations, so when a good fit comes along and it’s a win for everyone, we go for it!

Since turning 18 two years ago, Hunter has been living “independently” in this community. He relies on SSI benefits, Section 8 Housing, and Supportive Living Services from a CA Regional Center. With lots of support from family and staff, he is fully integrated into his community. But many kids with autism will turn 18 this year. What is the plan that will allow them to live as independently as possible? Many will need support and planning for housing, community integration and employment. Sadly, we know there are limited resources for our adult kids.

One of Autism Speaks key initiatives is focused on improving outcomes and quality of life for adults with autism this includes; secondary education, housing/residential living, employment and community integration. You will hear more about this in the coming months. In addition, Autism Speaks and other advocacy groups have fought for state insurance reform--a mandate that requires state-regulated health plans to provide medically necessary coverage for treatment of autism spectrum disorder. In California, insurance reimbursement is providing services that will lead to more people with autism living full lives in their community.

Mother’s day reminds me that we must continue to stand together and advocate for services and funding to give our kids the best chance at a full life in their communities. To all the Moms who each and every day go way beyond in their love and support for their kids with autism, Happy Mother’s Day! If you live in Santa Cruz, California, join me on Sunday where Moms bowl for free!

Other Bay Area News!
Autism Speaks Bay Area WALK- May 18^th
Stanford Hospital 6th Annual Autism Spectrum Disorder Update
Adult Housing and Lifespan Care Solutions Summit- May 29, 6:30-9pm at the University Club, Palo Alto. RSVPs are required. To RSVP contact jill.escher@gmail.com

Resource Highlights!
Autism Health Insurance Project - supports families at no cost to secure health insurance and other coverage for autism related interventions

Lifehouse – provides services to adolescents and adults with developmental disabilities through community integration, life-skill training, advocacy, referral and information.

Heart of Autism: Dani's Animation Movement

Kerry Magro — Fri, 10 May 2013 15:00:00 +0000

Dani is an 18-year-old girl with autism who is an animation guru, owns her own company and hires others on the spectrum!

This Heart of Autism post shares the story of Dani Bowman, an 18-year-old girl on the autism spectrum. Dani, when she was 11 years old, founded an organization called Powerlight Studios, a sole proprietorship, focused on animation, illustration and graphic arts. Autism Speaks Staffer Kerry Magro shares what he has learned about Dani Bowman’s story...

I first found out about Dani Bowman two years ago when I was consulting with Autism Speaks. She was featured in a news item with Joey Travolta's Inclusion Films and Toon Boom Animation to teach animation at several summer camps in 2011. Through this she had the opportunity to work with and teach 150 kids with autism! After reading the article, I was instantly blown away by her passion. To find out that she was on the spectrum made it that much more awe-inspiring.

Dani is one of the most talented individuals I’ve ever learned about on the autism spectrum. Her skills in animation, combined with her advocacy efforts, are unparalleled. Her company, Powerlight Studios, has 8 people working under her direction. A number of those individuals are on the spectrum. Because of her passion for animation she has partnered with Joey Travolta's Inclusion Films and Toon Boom Animation to teach animation at several summer camps in 2011. Through this she taught over 150 kids with autism!

Her story of self-advocacy is unique.It started with a conversation with her aunt 7 years ago. This was during a time she was having difficulty with sensory problems along with speech. Her aunt, who Dani began to live with that year, decided to tell Dani about her diagnosis. With a great amount of work and dedication Dani will be graduating high school this June. She has already reached out to several colleges to further her education.

In addition to Dani successfully finishing high school she has received recognition for her contributions in the autism community. Dani recently received recognition from the International Family Film Festival, naming her as the winner of Best Animation award for her featured short “Mr. Raindrop”.

Aside from her skills as an animator, Dani has many skills as a life-coach and inspirational speaker. Dani spends countless hours at different venues around the country, not only to help individuals with autism but to also educate our society about the world of autism and autistic individuals.

Dani’s heart always seems to be in the right place no matter what she’s doing. On her Powerlight Studios website she says that many with autism can lead fulfilling and successful lives by doing what they love. Through her passions and abilities she wants to change the world's perception of autism while inspiring others to follow their dreams!

For Dani the sky’s the limit for and I wish her the best in her future endeavors.

The Heart of Autism blog series tells the stories of individuals on the autism spectrum giving back to their community. Click here to read some previous entires!

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