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Home / Health / Why the focus of autism research is no longer in search of a "cure."

Why the focus of autism research is no longer in search of a "cure."

When the fraternal twins of Lizzie Acevedo, now 15, were diagnosed with new autism, she was hoping for diets and vitamin injections that were touted as panaceas or even remedies.

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

Around the age of 4, the boys took a gluten-free, casein-free diet and for several months ate mainly a special organic brand of chicken nuggets. Wheat products or something else with gluten had failed as well as dairy products containing the milk protein casein. Acevedo also began giving vitamin B1

2 injections by Defeat Autism Now! Doctor for her son Omar, who is non-verbal and has more significant mental disabilities than his brother Jorge, who speaks more independently.

"At the time, I just needed something to make things better," said Acevedo. She tried the treatments for several months, but stopped when she did not notice any significant effects.

Now, a decade later, Acevedo has heard of many hyped alternative approaches to autism, most recently by alarming reports that parents gave their children something to bleach drinks or enemas. However, she has also learned that there are no fast-track remedies for autism that interfere with brain development, and are characterized by communication difficulties and social skills, as well as limited interests and repetitive behavior.

"There is no cure for autism and anyone who tries to sell you a cure is lying," said Acevedo, a single parent and fifth grade teacher in Los Angeles.

But she understands why parents of autistic children can fall victim to scams. "I've been where they are now, and I know how desperate it is to get your kid to get better," she said.

"More complicated than anyone ever thought"

When autism research began A few decades ago, many scientists thought it might be easier to find a cure. Nowadays, the latest science points to a single cure, but there are ways to help autistic people lead a healthier and happier life.

"Given the complexity and variability of the causes, I think there are more ways to do this and the manifestations of autism that are trying to bring about a cure are probably not the right approach," said the autism researcher and psychologist Len Abbeduto, director of the University of California, Davis, MIND Institute in Sacramento.

An estimated 80 percent Autism cases are genetic factors that usually occur in families, but there is not a single "autism gene," Abbeduto said. In fact, research has shown that more than 100 genes and possibly more than 1,000 genes may play a role. Researchers also suggest that environmental factors – such as exposure to infectious agents, pesticides or other toxins during pregnancy – may play a role.

"Scientists are investing a lot of work in understanding genes, but we also find that this is a lot more complicated than anyone has ever imagined when they started," said psychologist Ann Wagner, national autism coordinator of US Department of Health.

It is very likely that there are different causes for different types of ASD.

] "We know it's very genetic, we just did not identify how certain types of genes could interact with each other or with other factors to cause autism spectrum disorder," said Wagner. "Autism is such a heterogeneous disease that most likely there are different causes for different types of ASD."

These research developments are taking place in the midst of growing controversy over whether autism needs healing at all. Autism Speaks, an interest and research group founded in 2005, removed the word "healing" from its mission statement in 2016.

"In the beginning [researchers] they searched more for the magic weapon, the magic pill. We were looking for the autism gene, and we thought that would eventually lead to a kind of cure for autism, "said psychologist Thomas Frazier, scientific director of Autism Speaks in New York. "Then we realized that we were far from the base."

Focusing on Early Detection

Researchers have now devoted much of their attention to identifying autism in children as early as possible, hoping to be able to intervene earlier with therapies to change the developmental trajectory of their young brains. While experienced physicians can diagnose autism in infants aged 18 to 24 months – there are detectable signs in infants at 6 months of age – most children are not diagnosed until they are 4 years old.

Katarzyna Chawarska, Professor of Child Psychiatry, who heads the Yale University Autism Center of Excellence in New Haven, Connecticut, is studying signs of autism in babies. "The reason why we focus so much on early detection is the hope that, through early intervention, we can take advantage of the still enormous brain plasticity that exists in the first, second and third year," she said. 19659005] The goal, according to Chawarska, is "to alleviate the symptoms and ensure that every child with autism develops its full potential."

If you're trying to get rid of autism, try getting rid of autism from us.

For example, physicians seek to minimize mental disabilities and help patients communicate better and improve their social skills. They also want to quickly identify and treat conditions that are commonly associated with autism, such as seizures, gastrointestinal problems, sleep disorders, attention deficit hyperactivity disorder, and anxiety.

Researchers are already seeing positive results in interventions such as behavioral therapies and language therapy in infants.

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

The idea of ​​healing autism has also become very controversial with the growth of the neurodiversity movement, which emphasizes that all people are respected and appreciated, regardless of whether they are "neurotypical".

Lizzie Acevedo with her sons Omar (left) and Jorge Ramirez. Courtesy of Lizzie Acevado

"The word" C "is attracting a lot of attention throughout the community," said Michael Maloney, executive director of the Organization for Autism Research, a group in Arlington, Virginia, to research the improvement Funded everyday autistic people. "The biggest objection comes from people with autism who see themselves as independent and competent and who do not need to be seen as broken and repaired."

Critics include Julia Bascom, executive director of the Autistic Self Advocacy Network. A Washington, DC-based group led by autistic individuals, including themselves.

"Self-advocates have largely successfully said that this concept of healing is really insulting," she said. "Who we are is fine, we just need support."

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

If you try to get rid of autism, try to get rid of us, and that's something that really takes our community personally, "she said. "There are certainly a lot of concomitant conditions, such as epilepsy that many of us have and we would not like to have, but we do not tend to think so in terms of autism, and we are very worried when we see that all this money flows into risk factors, causes, and genetics rather than figuring out why autistic people tend to have shorter lifetimes or why our suicide rate is nine times higher than the average or how autism really looks in adults. "

One of her other questions Why girls and people of color are diagnosed later in life, why autism has so many concomitant states, why people with autism tend to react differently to medications, and why they engage in self-injurious behaviors, such as head-banging and skin scratching.

Like Acevedo's boys, more and more adolescents and young people are falling adults from the cliff Adults live in the autism spectrum, but Bascom and others say that there is far too little research to understand how autistic people are affected throughout their lifespan and how to help them live life to the fullest to live. Most of the dollars spent on autism research go into understanding the biological foundations of autism to diagnose and treat infants.

US autism research expenditures in the US totaled more than $ 364.4 million in 2016. Of these, 80 percent comes from federal agencies and 20 percent from private organizations. According to the Government's Interagency Autism Coordinating Committee, only 2 percent of spending was on autism lifetime issues and 5 percent on services. A further 35 percent were devoted to biology, 24 percent to risk factors, 16 percent to treatment and interventions, 10 percent to infrastructure and surveillance, and 8 percent to screening and diagnosis.

Paul Shattuck, AJ Life Course Outcomes Research Program Director The Drexel Autism Institute in Philadelphia and a member of the Scientific Advisory Board of the Autism Research Organization agree that adults with autism are not given enough attention.

"We invest a lot in very small children with autism But as a society, we drop the ball as soon as these young people are young adults," he said. "For autistic adults or their families, there is not much in terms of services or even the question of how to support autistic people throughout their lifespan."

There are no exact numbers on the total number of Americans with autism, but one Estimation 3.5 million people are in the spectrum and the diagnoses have increased. About 1 in 59 children are affected by 2014, compared with 1 in 150 children in 2000, according to the latest data from the Centers for Disease Control and Prevention. While some of the increased prevalence may be a true increase in cases of autism, The CDC says that a broader definition of the autism spectrum and improved diagnostic measures have probably contributed to the higher numbers.

According to Shattuck's latest estimates, 70,000 to 80,000 or more autistic adolescents will turn 18 each year over the next decade, "he said, underscoring the need for urgent research to improve the health and well-being of autistic adults.

Autistic children are entitled to special education during their school years and can be cared for until old age 21, but after that it is more difficult to get help. "When teens leave high school, they fall off the so-called service cliff," Shattuck said. "It becomes much harder to find help and services when children are no longer eligible for special education. And the results for young adults and for adults are frankly quite bleak. "

Jorge (left) and Omar Ramirez. Lizzie Acevado

After graduation, most young autistic adults have no jobs, no vocational training, or no additional education. Autistic adults also strive to find independent living conditions, make friends, participate in community activities or have enough money to meet their needs, said Shattuck, whose center provides autistic people and their families with Medicaid paperwork , Social Security, Group Housing and Social Welfare helps More. Many autistic adults continue to live with their parents and express concerns about what happens when their parents die.

Wagner, the national autism coordinator, agrees that more research on autism is needed throughout the lifespan, saying the government is trying to attract and fund more research in this area.

Just like parents everywhere, Acevedo wants the best for their children. But after Omar and Jorge graduate from high school and the special education is over, she wonders – and worries – about the future.

"I would like to see more money for the transition from young adults with autism to most independent living they can get," said Acevedo. "I would like to see how the money is put into vocational training by taking on the skills of these children – because everyone has skills that they can master – and simply refining them so that these children become marketable, for a certain income achieve. Paying for a paycheck and making a name for yourself as an adult means so much, and I'm sure it will mean a lot to my children.

Shattuck says that it ultimately helps to help autistic adults or those with disabilities.

"Our organizations and communities work better if we make room for all people with all abilities," he said. "It's about helping ourselves and helping our communities to be better and higher quality places for all of us."

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