Research Early Signs And Treatment
There’s been widespread controversy about a possible connection between vaccines and the soaring autism rates. Some parents of children whose autistic symptoms first appeared shortly after their measles-mumps-rubella immunization are convinced the shot was the cause, but repeated studies have failed to find scientific evidence. Although one small, heavily publicized British study published in 1998 suggested a link, 10 of the 13 authors publicly retracted the findings in March 2004, saying they were unreliable. The study, lead by Dr. Andrew Wakefield, only studied a small sample of 12 kids, eight of whom were diagnosed with autism. By early 2010, the same British journal, The Lancet, that published his findings retracted his study and in January 2011, the British Medical Journal publicly denounced Dr. Wakefield’s research as “fraudulent.” The British Medical Journal announced that Dr. Wakefield had “falsified data” and tampered with his research results to give the MMR vaccine bad publicity. At the time of his study, Dr. Wakefield had been involved in a lawsuit against the manufacturers of the MMR vaccine and would have gained money if he’d won, making his research an obvious conflict of interest.
Who Are These Radical Scientists
Independent, decentralized biomedical research has come of age. Also sometimes called DIYbio, biohacking, or community biology, depending on whom you ask, open research is today a global movement with thousands of members, from scientists with advanced degrees to middle-grade students. Their motivations and interests vary across a wide spectrum, but transparency and accessibility are key to the ethos of the movement. Teams are agile, focused on shoestring-budget R& D, and aim to disrupt business as usual in the ivory towers of the scientific establishment.
Ethics oversight is critical to ensuring that research is conducted responsibly, even by biohackers.
Initiatives developed within the community, such as Open Insulin, which hopes to engineer processes for affordable, small-batch insulin production, “Slybera,” a provocative attempt to reverse engineer a $1 million dollar gene therapy, and the hundreds of projects posted on the collaboration platform Just One Giant Lab during the pandemic, all have one thing in common: to pursue testing in humans, they need an ethics oversight mechanism.
These groups, most of which operate collaboratively in community labs, homes, and online, recognize that some sort of oversight or guidance is usefuland that it’s the right thing to do.
What’s It Like To Have Autism Spectrum Disorder
A kid with autism might have trouble:
- talking and learning the meaning of words
- making friends or fitting in
- dealing with changes
- dealing with loud noises, bright lights, or crowds
Kids also might move in an unusual way or do the same thing over and over .
A kid with autism may have a little trouble with these things, or a lot. Some kids need only a little bit of help, and others might need a lot of help with learning and doing everyday stuff.
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Focusing On Early Diagnosis
Now, researchers have turned much of their attention to identifying autism in children as early as possible in hopes of intervening sooner with therapies to try to alter the developmental trajectory of their young brains. While skilled practitioners can diagnose autism in toddlers at 18 to 24 months of age with some research indicating there are detectable signs in babies as young as 6 months most kids arent diagnosed until age 4.
Katarzyna Chawarska, a professor of child psychiatry who leads Yale Universitys 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.
If youre trying to get rid of autism, youre trying to get rid of us.
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.
New Media Change The Way People Process Science
In recently completed research, author Francois shed some light on how the anti-vaccination movement uses social media to amplify doubt and fuel hesitancy. The research found that anti-vaxxers select and share scientific information from open access journal articles on social media to escalate uncertainty in the broader population.
Anybody, including activists with specific agendas, can produce and share information online. This is heightened on social media, where people are connected in real time on a global scale.
Most online media dont benefit from the quality control of journalists and editors that shapes the content of traditional mass media. Consequently, content is generated by experts and quacks alike, and opinion and facts become blurred. This makes it hard to judge if information is credible or not.
To complicate matters, people are able to create virtual communities of like-minded individuals who seek out information sources that they feel comfortable with. So people get more information they already agree with and few alternative views in online echo chambers. This results in anti- and pro-vaccine messages being shared and replicated in isolated groups, which polarises the contesting views even further.
So how can false information about vaccines shared on social media be countered? Scientists may think that sharing peer-reviewed, factual evidence about the safety of vaccines could change peoples views. Sadly, this is not the case.
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Awareness Of Autism Is Growing Rapidly We Know A Great Deal More Today Even Compared With Ten Years Ago
Unfortunately, some commonly held beliefs about Autism, which we know to be untrue, persist. This lack of understanding can make it difficult for people on the Autism Spectrum to have their condition recognised and to access the support they need. Misconceptions can lead to some people with Autism feeling isolated and alone.
Myths such as, All people with Autism have an outstanding savant skill or Children with Autism dont speak are explored below.
The facts: Although people with Autism share difficulties in the core areas of social-communication, restricted and repetitive behaviours and sensory processing, every person with Autism is unique and has different abilities and interests. This is why Autism is called a spectrum disorder, and why supports should be tailored to the persons individual needs.
The facts: Although some children with Autism may have delayed speech or may not use words to communicate, many have very well developed speech. In fact, some children may speak earlier than their typically developing peers but may have an unusual style of communication . It is important to note that there is a very wide range of skills and abilities amongst children with Autism in relation to speech, and communication overall.
Screening Guidelines For Autism
Continued awareness of autism has resulted in increased routine screening by pediatricians, another contributing factor to a rise in cases. The American Academy of Pediatricians recommends that all children be screened for ASD at ages 18 and 24 months, along with regular developmental surveillance.
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How Is Autism Spectrum Disorder Treated
There is no cure for autism, but treatment can make a big difference. The younger kids are when they start treatment, the better.
Doctors, therapists, and special education teachers can help kids learn to talk, play, and learn. Therapists also help kids learn about making friends, taking turns, and getting along.
Rates Are On The Rise
An estimated 1 in 40 children in this country have autism to some degree, according to a recent study from Pediatrics based on 2016 data. That’s about 1.5 million children between the ages 3 to 17. Nationwide, autism strikes three to four times more boys than girls the rates are about the same for kids of all races.
Although there seems to be an autism epidemic, the Pediatrics study attributes the increasing prevalence to more inclusive reporting. The definition of autism has been expanded in the past decade to include a wider spectrum of problems with communication and social interaction. “Ten years ago, many children with mild autism were simply not diagnosed,” says Adrian Sandler, M.D., a developmental-behavioral pediatrician at Mission Children’s Hospital, in Asheville, North Carolina, and chair of the American Academy of Pediatrics’ committee on children with disabilities. Plus, there are more state and federal programs for autistic kids, giving doctors an incentive to diagnose and refer them. However, there may be additional, unknown reasons for the spike in autism rates, and researchers are investigating everything from environmental toxins to viruses to food allergies.
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Autism: A True Increase Or Semantics
The jump in autism cases has spawned not only alarm but also debate about whether the number of children with autism could have increased that much in a relatively brief time.
“There’s a lot of controversy about that,” says Jeff Milunsky, MD, director of clinical genetics and associate director of the Center for Human Genetics at Boston University.
Two researchers who tracked the rate of autism in children born in the same area of England from 1992 to 1995 and then from 1996 to 1998 found that the rates were comparable, and concluded that the incidence of autism was stable. The study was published in the American Journal of Psychiatry in 2005.
But, Milunsky says, several studies have documented an increase in the U.S.
In a recent report in the journal Archives of Disease in Childhood, Milunsky and his colleagues point to several studies finding an increase in autism rates. In 2003, for instance, a large study conducted in Atlanta found that one in 166 to one in 250 children had autism, according to a report published in the Journal of the American Medical Association.
Another study conducted by the CDC in 14 states found an overall prevalence of one in 152, which Milunsky and others say is the generally accepted figure today.
“A kid labeled autistic today could have been labeled mentally retarded 10 years ago in the same school system,” Shattuck says. It wasn’t until 1992 that schools began to include autism as a special education classification.
Breaking Through The Barriers Of Asd
ASD has no cure. But there is hope through treatment. Many children can learn to communicate and interact. Healthcare providers and mental health experts have learned a lot about how to break through to these children.
Here are some things we know about children with an ASD:
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They may not be able to understand your nonverbal communications. They may not react to your smile or frown.
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They take things literally. You need to be careful to say exactly what you mean. If you hurry the child by saying “Step on it,” don’t be surprised if he or she asks what to step on.
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They may only be able to handle one thought or idea at a time. Keep conversations focused and simple.
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They may want to only talk about the one thing they are really interested in at a given time.
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They may see things differently than you do. You may not even notice ordinary sounds, tastes, touches, smells, and sights. But these may be physically painful to the child.
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Kids Are Getting Diagnosed Sooner
There’s no laboratory or medical test for detecting autism, so doctors must rely on behavioral signs. In the past, many were reluctant to label a child as autistic until symptoms became obvious. “The average age for diagnosis had been about 3.5, with many children diagnosed much later,” says Amy Wetherby, Ph.D., director of the Center for Autism and Related Disabilities at Florida State University, in Tallahassee. But that’s changing.
One reason is that pediatricians are becoming more aware of autism. At the same time, autism specialists are better at identifying early telltale signs such as a lack of babbling or pointing. “Most children with autism will show some signs of developmental disruption by their first birthday,” says Rebecca Landa, Ph.D., an autism researcher at Baltimore’s Kennedy Krieger Institute.
And while no one is yet diagnosing autism in children that young, doctors can now make a reliable assessment by 24 months when a child’s brain is still rapidly developing. “If we can intervene while a child’s brain is very immature, it will be much easier to help change her behavior,” Dr. Wetherby says.
Tip : Find Help And Support
Caring for a child with ASD can demand a lot of energy and time. There may be days when you feel overwhelmed, stressed, or discouraged. Parenting isnt ever easy, and raising a child with special needs is even more challenging. In order to be the best parent you can be, its essential that you take care of yourself.
Dont try to do everything on your own. You dont have to! There are many places that families of children with ASD can turn to for advice, a helping hand, advocacy, and support:
ADS support groups Joining an ASD support group is a great way to meet other families dealing with the same challenges you are. Parents can share information, get advice, and lean on each other for emotional support. Just being around others in the same boat and sharing their experience can go a long way toward reducing the isolation many parents feel after receiving a childs diagnosis.
Respite care Every parent needs a break now and again. And for parents coping with the added stress of ASD, this is especially true. In respite care, another caregiver takes over temporarily, giving you a break for a few hours, days, or even weeks.
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Why Autism Seems To Cluster In Some Immigrant Groups
Cultural barriers lead clinicians to misdiagnose or miss children with autism in immigrant communities.
Around 2 p.m. on a perfect summer afternoon in 2014, the clinicians arrived at Maki Gboros home in Denver, Colorado, to test his 18-month-old son Baraka for autism. The family had only recently moved to the United States from the Democratic Republic of Congo: Gboro came first, in 2009. His wife Odile Nabunyi arrived in 2013 with their two sons. They later had a third child, but at the time, Baraka was the youngest.
Gboro and Nabunyi sat on a sofa in the living room of their apartment and watched as the women from a community health clinic offered the toddler various objects. The womens goal was to observe how Baraka would play with the objects standard protocol for an autism evaluation. But the protocol seemed geared toward a child with a typical American upbringing. There was a pretend birthday cake, but Baraka had not yet been to an American birthday party. They gave him a plastic bag of Cheerios, the popular American breakfast cereal, but a typical breakfast in the Congo and in Gboros household is cheese, bread and milk, or sometimes porridge. And there was an African interpreter, too, but he spoke an unfamiliar French dialect and gave the boy instructions with words his parents never used. Sometimes, the clinicians spoke directly to Baraka in English, which he didnt understand at all.
Aging Out Of Services
This forced transition, called aging out, pushes them into the woefully lacking system for disabled adults. And its not just those with more severely disabled children who are worried. Parents whose children are termed high-functioning, including those with an Aspergers diagnosis, have reason to be concerned that their kidswho may be dealing with things like ADHD, anxiety and sensory issues in addition to their social and communication delaysare not going to magically stop needing support after they reach a certain chronological age.
Liane Kupferberg Carters autistic son Mickey turns 20 in July and, Carter, who has written much about the challenges of raising a child on the spectrum, admits to floundering.I dont know how to do this, she says. When our son Jonathan was preparing to leave home for college, we had a whole shelf of books to guide our family. But theres no such book guiding Carter as she faces the next step with her verbal but cognitively challenged son, diagnosed with PDD-NOS. Were making it up as we go, she says. Carter is certain of only one thing for Mickey, who likes to camp it up in a pair of Groucho Marx glasses: Due to his cognitive challenges and autism-related epilepsy, which is only partially controlled by medication, he will always need a supervised living situation.
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Dont Wait For A Diagnosis
As the parent of a child with ASD or related developmental delays, the best thing you can do is to start treatment right away. Seek help as soon as you suspect somethings wrong. Dont wait to see if your child will catch up later or outgrow the problem. Dont even wait for an official diagnosis. The earlier children with autism spectrum disorder get help, the greater their chance of treatment success. Early intervention is the most effective way to speed up your childs development and reduce the symptoms of autism over the lifespan.
When your child has autism
Learn about autism. The more you know about autism spectrum disorder, the better equipped youll be to make informed decisions for your child. Educate yourself about the treatment options, ask questions, and participate in all treatment decisions.
Become an expert on your child. Figure out what triggers your kids challenging or disruptive behaviors and what elicits a positive response. What does your child find stressful or frightening? Calming? Uncomfortable? Enjoyable? If you understand what affects your child, youll be better at troubleshooting problems and preventing or modifying situations that cause difficulties.
Dont give up. Its impossible to predict the course of autism spectrum disorder. Dont jump to conclusions about what life is going to be like for your child. Like everyone else, people with autism have an entire lifetime to grow and develop their abilities.