Autism research reported to be shifting from cure

Post Reply New Topic

When autism research started to really accelerate a couple decades ago, many scientists thought finding a cure might be easier. Today, the latest science points away from a single cure, but there are ways to help autistic people lead healthier, happier lives and more that can be done to help.

“I think that given the complexity and the variability of the causes and the manifestations of autism, trying to come up with a cure is probably not the right approach,” said autism researcher and psychologist Len Abbeduto, director of the University of California, Davis, MIND Institute in Sacramento.

An estimated 80 percent of autism cases involve genetic factors, and it tends to run in families, but there is no single “autism gene,” Abbeduto explained. In fact, research has shown that more than 100 genes, and maybe upwards of 1,000, may play a role. Researchers also suspect that environmental factors — such as exposures to infectious agents, pesticides or other toxins in pregnancy — may play a role.

“Scientists are investing a lot of work into understanding the genes but we’re also realizing it’s a lot more complicated than anybody ever thought when they started out,” psychologist Ann Wagner, national autism coordinator for the U.S. Department of Health and Human Services, said.

“We do know that it’s highly genetic, we just haven’t identified how particular kinds of genes might interact with each other or with other factors to cause autism spectrum disorder,” Wagner said. “Autism is such a heterogenous disorder, so it’s highly likely that there are different causes for different kinds of ASD.”

These research developments come amid growing controversy over whether autism even needs a cure. Autism Speaks, an advocacy and research group founded in 2005, removed the word “cure” from its mission statement in 2016.

“In the beginning, [researchers] were looking more for the magic bullet, the magic pill. We were looking for the autism gene, and we thought that would ultimately lead to some kind of cure of autism,” psychologist Thomas Frazier, chief science officer at Autism Speaks in New York, said. “Then we recognized that we were way off base.”

Katarzyna Chawarska, a professor of child psychiatry who leads Yale University’s Autism Center of Excellence in New Haven, Connecticut, is studying signs of autism in babies. “The reason why we are focusing so much on early diagnosis is that it is our hope that by intervening early, we can capitalize on still tremendous brain plasticity that is present in the first, second, third year of life,” she said.

The goal, Chawarska said, is “to help alleviate the symptoms and make sure that every child with autism reaches their full potential.”

Doctors, for instance, would like to minimize any intellectual disabilities and help patients communicate better and improve socials skills. They also want to quickly identify and address any medical conditions that often accompany autism, such as seizures, gastrointestinal problems, sleep disorders, Attention Deficit Hyperactivity Disorder and anxiety.

Researchers already are seeing positive results with interventions such as behavioral treatments and speech therapy in toddlers.

“One of the things that we do know is that intensive early intervention improves outcomes for kids, so the earlier we can intervene the better,” Abbeduto said.

The idea of curing autism also has become highly controversial with the growth of the neurodiversity movement, which emphasizes respecting and valuing all people for who they are, regardless of whether they are “neurotypical.”

The ‘C word’ raises a lot of attention in the community at large,” said Michael Maloney, executive director of the Organization for Autism Research, a group in Arlington, Virginia, that funds research to improve the daily lives of autistic people. “The largest objection is from people with autism who see themselves as independent and competent and don’t see themselves as broken and needing to be fixed.”

Autism research spending in the U.S. totaled more than $364.4 million in 2016, the latest year for which figures are available, with 80 percent of that money coming from federal agencies and 20 percent from private organizations. Of the spending, just 2 percent went toward autism lifespan issues and 5 percent toward services, according to the government’s Interagency Autism Coordinating Committee. An additional 35 percent went 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, director of the Life Course Outcomes Research Program at the A.J. Drexel Autism Institute in Philadelphia, and a member of the scientific council of the Organization for Autism Research, agrees that not enough attention is paid to adults with autism.

“We’re expending a lot of effort for very young children with autism, but as a society we kind of drop the ball once these young people become young adults,” he said. “There’s really not much there for autistic adults or their families in terms of services or even thinking how to support autistic people across the lifespan.”

I would love to see some more money put into the transition of young adults with autism into the most independent living situation they can get,” Acevedo said. “I would love to see money put into job training, taking the skills that these children have — because everybody has skills, something that they can do — and just really refining it and making these kids marketable to where they can earn some sort of income. There’s something about getting a paycheck and having your name on it as an adult that means so much, and I’m sure it’s going to mean a lot to my kids.”

Sounds great but I am not buying it. The desire for a cure is still there

The desire for a cure is there because there is a significant number of people with ASD like me who want a cure!

Ive read others on this forum state they want a cure.

ND really have to get their heads round the idea that they dont speak for everyone. Many of us embrace and dont fear scientific research.

Why is the idea of cure so scary to you? Do you not think as a grown adult 50+ i believe, (you stated on anoth thread sorry if im wrong) you would not be able to refuse such treatment?

Then you can figure out learning disabilities like autism.

In the science of “recovery,” a drug addict or alcoholic is never “cured.” The person is merely in remission and always “in treatment.”