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Why the focus of autism research shifts from the search for a "cure"



When Lizzie Acevedo's twin brothers were diagnosed with autism at the age of 15, she hoped for diets and vitamin injections that were touted as miraculous or even healing.

Omar (left) and Jorge Ramirez. [19659003] Courtesy of Lizzie Acevado

For about 4 years, boys have been on a gluten-free, casein-free diet, and for several months have been eating mostly specialty organic chicken nuggets. Wheat or gluten products were out, as were dairy foods containing casein with milk protein. Acevedo has also started injecting vitamin B1

2, prescribed by Defeat Autism Now! Doctor, to his son Omar, who is non-verbal and has more significant intellectual disabilities than his brother Jorge, who speaks and is more independent.

"Then I just needed something to improve things," Acevedo said. She tried the treatment for a few months, but stopped when she did not notice a noticeable effect.

Now, a decade later, Acevedo has heard of many over-the-counter approaches to autism, most recently worrying reports from parents giving their children whitening drinks or enemas. She also learned that there are no rapid treatments for autism that affect brain development and are characterized by communication and social skills difficulties, as well as limited interests and repetitive behavior.

"There is no cure for autism and anyone trying to sell you a cure for lying," says Acevedo, a lone parent and fifth-grade teacher in Los Angeles.

But she understands why parents of autistic children can become fraudsters. "I've been where they are now, and I know how desperate it feels to want to make your child better," she says.

"More complicated than anyone ever thought"

When autism studies began to really accelerate decades ago, many scientists think finding a cure may be easier. Today, the latest science is focusing on a single cure, but there are ways to help people with autism lead healthier, happier lives and more that can be done to help.

"I think, given the complexity and variability of the causes and manifestations of autism, trying to cure it may not be the right approach," says Autism researcher and psychologist Len Abbeduto, director of the University of California Davis, MIND Institute Sacramento

About 80 percent of autism cases involve genetic factors and tend to run in families, but there is no single "autism gene," Abbeduto explained. In fact, studies show that more than 100 genes, and perhaps more than 1000, can play ro J. Researchers also suspect that environmental factors – such as exposure to infectious agents, pesticides or other toxins in pregnancy – can play a role.

"Scientists put a lot of work into understanding genes, but we also realize that is much more complicated than anyone ever thought when they started, "says psychologist Ann Wagner, national autism coordinator at the US Department of Health and Human Services.

There are likely to be different causes for different types of ASD. [19659015] "We know it's highly genetic, we just haven't found how specific types of genes can interact with each other or with other factors that cause autism spectrum disorders," Wagner says. "Autism is such a heterogeneous disorder that it is very likely that there will be different causes for different types of ASD."

These scientific developments come amid growing controversy as to whether autism even needs treatment. Autism Speaks, an advocacy and research group established in 2005, removed the word "cure" from its mission statement in 2016.

"In the beginning [researchers]they were looking for more about the magic bullet, the magic pill. We searched for the gene for autism and decided it would eventually lead to some kind of cure for autism, "says psychologist Thomas Fraser, chief scientific officer at Autism Speaks in New York. "Then we realized we were way off base."

Focusing on early diagnosis

Now, researchers have focused much of their attention on identifying autism in children as early as possible, hoping to get involved as soon as possible therapies to try to change the trajectory of development of their young brains. While skilled practitioners can diagnose autism in young children between the ages of 18 and 24 months – with some studies showing that there are noticeable signs in infants 6 years of age – most children are not diagnosed until 4 years of age.

Katarzyna Chavarska, a professor of child psychiatry who runs the Center for Excellence in Autism at Yale University in New Haven, Connecticut, studies the signs of autism in babies. "The reason we focus so much on early diagnosis is that we hope that by intervening early, we can still use the tremendous brain plasticity that is present in the first, second, third year of life," she said. [19659005] The goal, Chavarska said, is "to help alleviate symptoms and ensure that every child with autism reaches their full potential."

If you are trying to get rid of autism, you are trying to get rid of it .

Physicians, for example, would like to minimize intellectual disability and help patients communicate better and improve social skills. They also want to quickly identify and address all the medical conditions that often accompany autism, such as seizures, gastrointestinal problems, sleep disorders, attention deficit hyperactivity disorder and anxiety. Researchers already see positive results in interventions such as behavioral treatments and speech therapy in young children.

"One of the things we know is that intensive early intervention improves outcomes for children, so the sooner we can get better," Abbeduto said.

The idea of ​​curing autism has also become strongly at odds with the growth of the neurodiversity movement, which emphasizes the respect and appreciation of all people for who they are, whether they are 'neurotypical'.

Lizzie Acevedo with her sons Omar (left) and Jorge Ramirez. With the kind assistance of Lizzie Acevado

"The C word" draws a lot of attention in the community as a whole, "says Michael Maloney, executive director of the Autism Research Organization, a group in Arlington, Virginia, which funds research to improve daily life of people with autism. "The biggest objection is from people with autism who consider themselves independent and competent and do not consider themselves broken and in need of repair."

Among the critics is Julia Bascom, CEO of the Autism Self-Defense Network, A Washington-based Washington group run by people with autism, including herself.

"Self-advocates largely manage to say that this concept of treatment is really offensive," she said. "Who We Are OK, We Just Need Support."

Bascom does not oppose research and therapies that help people with autism – as long as they do not try to deprive them of their autistic traits.

"If you are trying to get rid of autism, you are trying to get rid of us and this is something that our community takes really personally," she said. "There are certainly many co-occurring conditions such as epilepsy that many of us have that we would like to have. But we are not inclined to feel that way about autism, and we really worry when we see that all that money is going into risk factors and causation and genetics, instead of understanding why autistic people tend to have shorter ones a lifetime, or why our suicide rate is nine times higher than average, or what autism really looks like in adults. "

Some of her other questions include why girls and people of color are diagnosed later in life, why autism has so many conditions, why people with autism tend to respond differently to medication and why they engage in self-injurious behavior such as blows to the head and scratching of the skin.

Falling from the Scale of Services

Like the Acevedo boys, a growing number of teens and adults live in the autism spectrum, but Bascom et al claim that there is too little research to understand how people with autism are affected throughout their lives and how to help them live life to the fullest. Most dollars for autism research in the United States go toward understanding the biological basics of autism for the diagnosis and treatment of young children.

The cost of autism research in the US totaled more than $ 364.4 million in 2016, the last year for which data is available, with 80 percent of that money coming from federal agencies and 20 percent from private organizations. Of the costs, only 2 percent focus on life problems for autism and 5 percent for services, according to the government's Interagency Autism Coordination Committee. An additional 35 percent go to biology, 24 percent to risk factors, 16 percent to treatment and intervention, 10 percent to infrastructure and surveillance, and 8 percent to screening and diagnosis.

Paul Shatuk, director of the life course research program at the AJ Drexel Institute for Autism in Philadelphia and a member of the Scientific Council of the Organization for the Study of Autism, agrees that insufficient attention is paid to adults with autism.

"We put a lot of effort into very young children with autism, but as a society, we somehow lose the ball after these young people become young adults," he said. "There really aren't many adults with autism or their families in terms of services, or even thinking about supporting lifelong autism."

There are no exact figures for the total number of Americans with autism, but with an estimated 3.5 million people are on the spectrum, and diagnoses are increasing. About 1 in 59 children are on the autism spectrum, according to the latest data from the Centers for Disease Control and Prevention from 2014, compared to 1 in 150 children in 2000. Although some of the increased prevalence may be a real increase in cases of autism, the CDC says that a broader definition of the autism spectrum and improved diagnostic efforts may have contributed to the higher numbers.

According to recent Shattuck surveys, 70,000 to 80,000 or more autistic youth will be 18 years old. "This is close to a million people over the next decade," he said, emphasizing the urgent need for research to address the health and well-being of adults with autism.

Children with autism are entitled to special education services while in school and the services may continue until age 21, but assistance is more difficult to obtain afterwards. "When teens leave high school, they drop out of what is called a service scale," says Shatuk. "It becomes much more difficult to find help and services after children are left without the right to special education. Both the results for young adults and the results for adults are quite frankly honest. ”

Jorge (left) and Omar Ramirez. Lizzie Achevado

After high school, most young autists have no job, career training or additional educational opportunities. Older adults with autism also struggle to find an independent lifestyle, maintain friendships, engage in community activities or have enough money to pay for their needs, said Shatuk, whose center helps people with autism and their families with documents for Medicaid, Social Security, group housing and More ▼. Many adults with autism continue to live with their parents, raising concerns about what happens when parents die.

Wagner, the national autism coordinator, agreed that more studies on lifelong autism should be conducted and said the government was trying to attract and fund more research in this area.

Just like parents everywhere, Acevedo wants the best for his children. But as Omar and Jorge graduate from high school and special education services finish, she wonders – and worries – what the future holds.

"I would like to see more money invested in the transition of young people with autism into the most independent living condition they can receive," Acevedo said. "I would love to see money put into job training, taking advantage of the skills these kids have – because everyone has the skills, something they can do – and just perfecting it and making those kids trade to places , where they can earn some income, There is something about getting a paycheck and having your name as an adult, which means so much and I'm sure it will mean a lot to my children. "

Shattuck says that helping adults with autism or people with disabilities ultimately helps everyone.

"Our organizations and our communities function better when we create space for all abilities," he said. "This is to help ourselves and help our communities be better, better places for all of us."

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