June 30, 2021, Fort Myers (FL) Weekly: Understanding autism Researchers attempt to unravel the mysteries of the syndrome https://fortmyers.floridaweekly.com/articles/understanding-autism/
They couldn’t be more different — or so it appears. One is a child who is doesn’t speak, wants to be alone, displays repetitive behaviors like rocking or flapping his hands, avoids eye contact, has intellectual disabilities and seems to lack emotion or empathy. The other is an individual with a high IQ who displays great language skills, is gifted in one or more areas of study, like math or computers, and is able to live independently, have relationships and a successful career.
Both share common characteristics like difficulty with communication and social interaction, and restrictive, repetitive patterns of behavior. They represent two extremes of people with autism. Between these extremes, there are innumerable iterations and combinations of symptoms, severity and skills. No two are the same. It is a spectrum. The name diagnosticians give it is autism spectrum disorder. Autism and ASD are used interchangeably.
For 1 in 54 children in the United States and about 5.4 million adults, according to CDC statistics released in 2020, a diagnosis of ASD is life-changing and lifelong for them and the people who love them. Their own spectrum of experiences might range from challenge and heartbreak on one end to inspiration and joy on the other. Each journey will be different….
In 2015, it was estimated that the total annual cost of autism spectrum disorders in the United States was around $268 billion, according to a study in the Journal of Autism and Developmental Disorders. The figure is forecast to increase to around $461 billion dollars annually by 2025.
“Autism spectrum disorder is a developmental disability,” said Dr. Michael J. Morrier, associate professor of psychiatry and behavioral sciences at Emory University School of Medicine and program director of screening and assessment at the Emory Autism Center in Atlanta. A disease implies something that might be “catchy” or has a cure, he added, whereas you cannot catch nor are you cured of autism. …
In the 1980s, autism was considered to be extremely rare, affecting 4 in 10,000 children, according to the Autism Science Foundation, a nonprofit that supports autism research by scientists and organizations and raises public awareness of ASD.
Forty years later, the latest CDC study in 2020 says the number is 1 in 54 children.
But children with ASD grow up. Previously, there was no estimate of the number of adults with ASD.
In May 2020, the CDC came out with the results of its first study: About 5.4 million adults over age 18, or 2.2% of the adult population, are estimated to be on the autism spectrum.
Are the numbers of people with ASD growing, or are we just realizing now what has always been there?
“I think there’s no clear answer on that,” Dr. Morrier said. Diagnoses continue to be revised and expanded and our knowledge keeps increasing. Years ago there were people who would now be considered to have autism who were diagnosed with something else.
“That’s the million-dollar question,” Dr. Adreon said. “There is no question that the changes in the conceptualization of autism, both in terms of core deficits and the broad spectrum, are a huge factor in terms of recognition of more individuals having autism.”
When he started in the 1980s, Dr. Morrier said, people “wouldn’t know what I was talking about” when he told them he worked with kids with autism.
Now they do.
Back then, it was thought that 70% of people with autism had intellectual disabilities, he said. Now it is reversed — “70% of people with autism do NOT have an intellectual disability,” he said. “They’re average or above average IQ.”
“Cold” parenting an early theory
The concept of autism spectrum disorder first arrived on the scene about 30 years ago. It was a long time coming….
The scientific consensus is that there is a genetic predisposition to autism, with some kind of environmental trigger, both Dr. Morrier and Dr. Adreon said.
“There’s not a single gene. There’s multiple genes involved, and so the recurrence of autism within the family is much higher than we originally thought,” Dr. Adreon said.
A 2020 recap of research by the Autism Science Foundation says that the largest analysis of genes associated with autism published “not only identified 102 genes that significantly contributed to autism risk, but also noted that some are associated with neurodevelopmental disorders in general, including intellectual disability, while others were specific to ASD.” …
“It doesn’t mean they’re wrong. It just means they’re different,” he said. “It’s like someone once explained to me: Autism is kind of like being lefthanded. Things are made for righthanded people. Scissors are made for that. Desks are made for that at school.”
Not that being left-handed is wrong, he said.
“It’s just the world is not designed to accommodate that. With people with autism, there’s nothing wrong with them. It’s that the world is not used to accommodating their strengths. And people with autism have a lot of strengths.” …
Awareness of ASD continues to increase as the scope of the diagnosis expands, it is diagnosed more frequently and receives increased attention from the media. The rise of the concept of neurodiversity over the last several years has also driven awareness.
Neurodiversity has become a predominant movement in the autism community. The term was coined by Judy Singer, an Australian sociologist who also has ASD, when she used it in an academic paper she presented in 1998.
Neurodiversity basically says that autism is part of the normal range of neurological diversity among humans. It is not abnormal — it is just different. It should be accepted as such, and not as a defect or deficit, something that needs to be “fixed.”