EDITOR'S NOTE: This story was originally published on May 11, 2017. We are re-releasing it for World Autism Awareness Day, which is celebrated every year on April 2nd.
During Autism Awareness Month, I spoke with a group of men and women who say, once they became adults, they were ejected from the national conversation about Autism.
They raised questions about funding, the lack of resources and services available to adults on the Autism spectrum. They also informed me about what they call a new "civil rights movement" that seeks to bring support, awareness, and justice to people who consider themselves a minority group with a brain that just works differently, as opposed to considering themselves patients suffering from a disease.
The concept of neurodiversity, as referring to people with this and other neurological disorders, has gained traction since Jim Sinclair, founder of the Autism Network International, coined it in 1993.
People who are not neurodiverse are referred to as neurotypical. I first heard the word from Eve Hinson, Founder of American Badass Advocates in an email she sent ABC10, criticizing the leading Autism awareness campaigns.
The Autism Society began observing National Autism Awareness Month (NAAM) in the 1970’s. During nearly half a century since, the incidence of Autism has skyrocketed from then 1-in-2,000 children, to 1-in-68 school-aged children today, according to the Centers for Disease Control and Prevention.
Due to increases in research and funding for scientific studies, we now understand much more about the disorder, but as Dr. Len Abbeduto, Director of the UC Davis MIND institute said, “part of the challenge has been that first of all, Autism is not a single thing. We know that there are lots of different manifestations and subtypes of Autism and how Autism has a lot of different causes in contributing factors."
The work of specialists like Dr. Sally Rogers -- who developed one of the most celebrated and successful treatments programs for ASD, The Early Start Denver Model -- have placed the MIND Institute at the forefront of research on Autism Spectrum Disorder.
The institute receives $25 million every year in grants and contracts for research, treatment and even family services related to a number of neurodevelopment disorders.
MIND has also contributed to the collective wisdom about what causes Autism.
Dr. Irva Hertz Picciotto, a leading epidemiologist working at MIND, conducted a study in the Sacramento area and the Central Valley which found “the mothers of children with Autism are more likely to live closer to those agricultural pesticide applications than mothers of typically developing children."
"Basically within about a mile, maybe a little more than a mile compared to people who are further away from these applications, we were seeing a higher risk," said Picciotto.
She also explained that poor maternal nutrition, a short lag between pregnancies, and the age of the parents all have an impact on the likelihood of birthing a child with ASD.
One of the MIND Institute founders, Dr. Lou Vismara, spent some time with us at the Institute. There, we also met his 24-year-old neurodiverse son Mark Vismara, who works at MIND distributing lunches and running other errands.
Mark was diagnosed with Autism at 18-months-old. Dr. Vismara said back then, the incidence of cases was low at 1-in-500. Initially, he and his wife “lived in a bunker” keeping the diagnosis secret.
“We still had the vision that Mark could be cured,” he said. “We didn't want to stigmatize him and we, really like so many other families, went through all of the stages of grief. Initially, denial, anger and worrisome.”
Those early emotions turned into action and he, along with a few other families of autistic children, came together to start the now massively successful initiative.
Dr. Vismara said he now understands that although early intervention and other therapies have proven helpful in improving outcomes for people on the spectrum, there is no such thing as a cure. His focus as a father, advocate and doctor is to find ways that adults with ASD are supported with what they need to live “productive and important lives.”
“You know what we all need?” he asked, “We all need a job, a home and a friend.”
He explained that “nine out of 10 adults with Autism are not employed, and those regional center consumers who are employed, you know, with their average salary is per year of $4,800.”
That’s $400 a month, which makes it overwhelmingly difficult to achieve independence, even with disability benefits.
“I travel in a small pickup truck with three other people and we go to various locations around Fresno City. The main contract being the airport. We’ll mop floors and pick up trash and replace liners of trash cans, clean bathrooms and things like that," said Jared Hinson, Eve’s son. "That’s my almost daily basis.”
His mother said he has a gifted mind and his talents should be applied elsewhere.
These were some of the same concerns that I heard from Eve’s friends when I met them at her home in Fresno. The difference is that Eve and the group of neurodiverse men and women I heard from were, in addition, worried about the direction where scientific research is headed.
"We are worried that there's a test, a genetic marking test that you can take while you are still pregnant to find out what exactly your kid will ‘have’ and if they find Autism they will ask you, 'are you sure you still wish to proceed with this?' and this is absolutely selfish," said Anne Christensen.
The MIND Institute is taking part in Spark, the largest, most ambitious study ever done on Autism. The goal is to enroll 50,000 families who have a son or daughter in the spectrum within three years in order to better understand the genetics of the disorder.
I asked Dr. Abbeduto about the concern that genetic testing could open the door for parents to terminate a pregnancy.
"Well, I think it shows that in science is not a value neutral right?" he said. "Everything we discover has the potential to change how people behave."
“I think a lot of what we can do is to give people choices about how they live their lives and ultimately their choice for how they raise their children,” he added. “I don't think there's a path we shouldn't go down because it might create controversy.”
Dr. Hertz-Picciotto's scientists are trying to “understand a wide range of genetic contributions to risk for Autism so that families will have that knowledge going forward.”
She says this kind of research will “really help us develop treatments that may be tailored in an individualized way, so that if you have particular genetic risk factors for Autism, maybe you need a different medication.”
Wherever the science leads, movements like Eve's, the ANI and the Autism Self-Advocacy network all advocate for educating the neurotypical world on the importance of understanding and embracing neurodiverse people, their differences, and their talents.
Jennifer Davis, who like Eve, is a neurodiverse mom raising a neurodiverse child, said she chose to raise her child to embrace his differences and hopes the neurotypical world will catch on.
“He doesn’t care. He says 'it makes me smarter and it makes me special and it makes me different' and he likes the fact that he's autistic. That has made me realize how difficult that made my life, trying to cover up the fact that I wasn't like everybody else," Davis said.