Our community's success with self advocacy raises new issues for all

April is Autism Month, which means many things to the ten-plus million people who make up our community in America.  For some, it’s Autism Awareness.  For others, it’s Autism Acceptance.  And there are those who wish for Autism Cure.   We have yet to agree on what we want, or what to stand for, and that holds us back in terms of advocacy.  We also don’t agree when it comes to who’s part of our community.

My boy, with his classic autism, the kind that used to be the only face of autism half a century ago, is the one who does not belong now.

There is a child at this event, as cute as any Baby Gap model, thick tufts of brown hair sticking out from under his baseball hat.  

“I’m Charlie. I’m 4, ” he says to me and sticks his hand out.  

I smile at him and reach my hand out too, but before he can shake my hand, he runs off to chase the other children.

Earlier this week, the White House and autism organizations around the world celebrated the 10^th annual World Autism Awareness Day. Actor William Shatner, best known for his role in Star Trek, changed his profile icon and tweeted his support into the related hashtag to draw awareness to the disability. Today, he was inundated with outrage from social justice warriors likened his support for autism awareness to hate speech. They further expressed their anger towards organizations like Autism Speaks, which sponsored the event.

Susan Scutti

(CNN) Preventable injuries often lead to death among people with autism, a new study says. They are three times more likely than the general population to die because of injuries, according to the study, published Tuesday in the American Journal of Public Health.

Amanda Erickson 

In Australia, there used to be widespread agreement that vaccinating children against fatal diseases was a good thing. Kids got shots, and the rate of childhood diseases plummeted.

But then things changed. In 1994, a group calling itself the Australian Vaccination Network launched a campaign claiming the risks of vaccines (which are essentially nonexistent). Its core mission: “to ensure that vaccinations are never made compulsory for Australian children." (Years later, the group was forced to change its name to the Australian Vaccination-Skeptics Network, or else be de-registered.) The group seized on a fraudulent, wholly discredited paper linking the MMR vaccine to autism.

Can a new clinical approach end a pattern of failure and frustration?

RACHEL ZAMZOW

Taylor Stevenson’s family never left him out of conversations, but they never expected him to participate, either. His contributions, if he made any, were a few random words—gibberish or a Big Bird quote.

Typo in Pediatrics inflates increase in autism

by F. Perry Wilson MD, MSCE

The paper contains a jarring statement: the rate of autism spectrum disorder rose by "almost 400%" from 2007 to 2011, but the statement is wrong.

The paper in question is published online today by Pediatrics, but a close review of the data revealed that the number was drastically inflated.

Emily Willingham 

In a strongly worded statement dated February 1, the board of directors of the International Society for Autism Research (INSAR) has expressed its “unanimous denunciation” of what it calls “restrictive immigration policies” as laid out in what is likely Donald Trump’s most controversial executive order (EO) to date. The complete text was posted to INSAR’s website January 31.

NICHOLETTE ZELIADT 

About one in four children with autism hit, scratch or otherwise hurt themselves, suggests an analysis of school and medical records for more than 8,000 children in the United States. Children who engage in self-injury tend to have mood and behavioral challenges, as well as cognitive impairment.

A SUMMARY OF AUTISM DISCOVERIES IN 2016 AND WHAT THEY MEAN TO FAMILIES

For decades, the autism community has known that autism affects the entire family. Biological parents have been included in autism studies to examine where genetic mutations come from, but always with an eye for understanding the affected individual. This year in research saw a much bigger focus on family members of those with autism, particularly siblings. The goal of these studies is to understand the genetic and biological nature of autism so that help can be provided not just to those with a diagnosis, but to family members.

Many studies focused on what is known as the broader autism phenotype, previously explored in biological parents. The broader autism phenotype refers to some behavioral features of autism, including those in emotion, language, and social skills that do not meet the level of a diagnosis of autism spectrum disorder. Rather, they have been termed anything from “intermediate” autism to “a hint of autism.” Joe Piven and James Harris hypothesized this year that Bruno Bettleheim may have tragically misinterpreted these features, in the absence of a true understanding of autism, as “refrigerator mothers.” Clinicians have urged scientists to note these symptoms in a way that does not create a new diagnostic category and noting certain social, personality and language characteristics in family members has been crucial for nailing down the underlying biology.