Open Letter to Journalists on Eve of Autism Awareness Month

From Age of Autism's Media Editor Anne Dachel.

Dear Fellow Members of the Media: (That includes all of you at CBS, NBC, CNN, Forbes, New York Times, Chicago Trib, LA Times, et al.)

April is coming up and I wanted to say a few words about the month dedicated to autism awareness.  Many of us in the autism community are tired of stories about lighting the world up in blue and celebrating autism as if parents should be happy about a diagnosis.  We've endured years of feel-good coverage about awareness, fund-raising walks, and no explanation for the mystery of autism.  

Most of all, we want you to do your jobs. 

Nets' Guard Blindsided by Son's Diagnosis

Brooklyn Nets Deron Williams with
his son Deron Jr. aka DJ, 3, and
wife Amy at a celebration at
Brooklyn Borough Hall.

NEW YORK, N.Y. -- Sitting at a SoHo restaurant, expressing a mood seemingly solar systems removed from the Nets’ struggles on the court, Deron Williams is smiling while covered with orange face paint — “festive colors,” he calls it. A little girl comes up to Williams decorated like a tiger. He growls, prompting the child to growl back more ferociously.
Some other kids are opening gifts donated by Williams, with basketballs and X-Box games among the favorites. Every year the star point guard and his wife, Amy, put together this kind of charitable holiday party with their Point of Hope Foundation.
But on Saturday the theme is different: autism awareness. The inspiration is 3-year-old D.J. Williams, the energetic young boy walking around the restaurant with a pretzel stick and a toy.

Tommy Hilfiger Opens Up on Daughter's Autism

Designer Tommy Hilfiger is featured
in a public service announcement
for Autism Speaks.

Tommy Hilfiger and his wife Dee have more in common than just design success -- they both have children affected with autism.
Hilfiger said that one of the reasons he chose to appear in a public service announcement for the philanthropy Autism Speaks was to honor his16 year-old daughter, Kathleen.
He said that she when was five years old, she was given the diagnosis of being “developmentally delayed.”

Doctors Can Learn from Neurodiversity Movement

A must-read from the American Medical Association's Virtual Mentor, an article by Christina Nicolaidis, MD, MPH, an associate professor in the Departments of Medicine and Public Health and Preventive Medicine at the Oregon Health and Science University (OHSU) in Portland. Dr. Nicolaidis co-directs the Academic Autism Spectrum Partnership in Research and Education (AASPIRE), directs the Samuel Wise Fellowship in General Internal Medicine at OHSU, and serves as a standing member of the NIH Mental Health Services study section. 

When, at age 3, my son received a medical diagnosis of autism, my husband and I received a list of intensive treatments that we needed to initiate as quickly as possible and a pep talk saying that if we did these things there was a good chance we could “fix him.” As a mother, I was terrified. Images of Rain Man filled my mind, quickly followed by painful memories of security officers trying to restrain my beloved 350-pound adult autistic patient during a violent meltdown. As a physician and researcher, I did what I was best trained to do — I quickly took charge of the situation, scheduled consultations with every type of therapist in the city, and immersed myself in the autism literature. But I soon realized that expert opinions clashed greatly, there were no easy answers, and the evidence in support of the various therapies was extremely limited.

The Puzzle of More Autism Cases

An editorial from today's edition of The New York Times.

The latest federal survey suggests that more than 1 percent of all children in the country have been identified as having autism or two related disorders by the age of 8, a far higher percentage than found in previous surveys. But no one knows whether the increase shows that the disorders are more common or whether it simply reflects better detection of cases that would previously have been missed

'If Autism Makes Me Me, I Wouldn't Trade it for Anything'

Came across this on an Albany Times Union blog it really resonated. We as a field, need to stop recognizing people as having autism or a developmental disability, for that matter. Why can't they just be people and accept the fact that everyone is different?

Hi, I’m Zack Kilmer, and I have Autism.
More specifically, I have PDD-NOS which stands for Pervasive Developmental Disorder-Not Otherwise Specified. There are 3 major classifications on the Autism spectrum: Autism, Asperger Syndrome, and PDD-NOS.
You can look up details if you want, but PDD-NOS is basically the name doctors stick on kids when they don’t meet all of the criteria of Aspergers or classic Autism, but still exhibit obvious deficiencies in social interaction, motor skills, and/or communication.
Those who know me are always shocked when I tell them. “I never would have guessed” is something I get a lot. This is understandable, as I’ve exceeded the wildest expectations of when I was young, and have become mostly normal at this point. You might just think I was a little awkward or quirky.

Film Explores Struggle Accepting Autism

NEW YORK -- Charles Jones is telling the little family secret about autism that few people talk about openly: That many fathers of children with special needs have a tough time facing it.
“I felt a lot of guilt, shame, a lot of things—anger. Didn’t know who to be mad at. God, why did you do this to him? What did this little boy do?” says Jones.
Jones' son Charles Malik was diagnosed with autism as a toddler in 2006, and the filmmaker says he was overwhelmed and even embarrassed.
"There was a time I couldn’t talk about my son’s condition. When I told my dad, I begged him, please don’t tell anybody," says Jones.

A Mother's Battle for a Cure

STATEN ISLAND, N.Y. — When a mother sees her child sick or in pain, her maternal instincts take over. She will do anything and everything in her power to heal whatever ails her offspring, no matter how enormous the sacrifices or logic-defying the path.
For 17 years, Eileen Phoenix has put her heart, soul and a lot of money into finding a cure for her autistic 19-year-old daughter, Kasey.

Siblings and Autism: Reconciling Their Needs

SILVER SPRING, Md. -- I do a lot of thinking about what having an autistic brother means to my other two sons. For the most part, now that they are all between the ages of 6 and 9, they are siblings just like any others—sometimes they are best friends and sometimes they act like they want to kill each other. Yet, I know that the coming years will bring extra challenges to their relationship.

A couple of years ago, I visited my home town. While telling some of my old high school friends about Jack, my son with autism, one of them said, "You know I have a brother with autism, right?" I thought about it and I remembered him. I hadn't ever interacted with him much, but he was definitely different than the rest of us. I'd never known he was autistic, but after she said that, it made complete sense.

I asked her how it was to grow up with an autistic brother. I think I was hoping that she would tell me that he had brought extra meaning to her life, that he had taught her to appreciate differences or that she had learned something important from him.

She thought about it for a minute and then she told me that it was hard. That sometimes it was embarrassing.

It was tough to hear that, but it was honest.

Accepting a Child's Autism

Found this heartfelt piece by Jean Winegardner, who writes a personal blog at Stimeyland and an autism-events website for Montgomery County, Maryland, at AutMont. You can find her on Twitter as @Stimey. Read more of Jean's work at Autism Unexpected in the Communities at the Washington Times.


SILVER SPRING, Md. — Those of us in the autism community speak often of autism acceptance. While there is much emphasis on autism awareness, many of us feel that awareness matters little without the acceptance that hopefully follows.
We strive for acceptance in our children's schools, playgrounds, families and in society in general. But what about the place where it can be hardest to create acceptance — in our own hearts and minds?