Fort Myers Florida Weekly

Understanding autism

Researchers attempt to unravel the mysteries of the syndrome



They couldn’t be more different — or so it appears. One is a child who 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.

“They could have a genius level IQ, several Ph.D.s, but they can’t hold down a job.” — Dr. Michael J. Morrier

“They could have a genius level IQ, several Ph.D.s, but they can’t hold down a job.” — Dr. Michael J. Morrier

The impacts are not only emotional and physical, but financial.

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.

The study included productivity loss for people with autism and their parents, along with productivity losses among those providing medical and non-medical services, special education and residential care and accommodation for those on the spectrum.

What it is and isn’t

MORRIER

MORRIER

Autism is not a disease.

“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.

The symptoms of autism emerge in early childhood, although they might not be recognized until later in one’s life, said Diane Adreon, Ph.D., who holds a doctorate in special education and is an associate director of the Center for Autism and Related Disabilities at the University of Miami-Nova Southeastern University. She has co-authored three books on autism spectrum disorder. She also has a 34-year-old son with ASD who was diagnosed at age 10.

The average age of diagnosis is still between age 4 and 5, though there are signs as young as 6 months in kids who eventually get a diagnosis, Dr. Morrier said.

ADREON

ADREON

Some of the signs and symptoms, culled from the National Autism Association, the Mayo Clinic, the CDC and other entities dealing with autism-related issues and education, are:

¦ Not responding to their name or appearing deaf

¦ Doesn’t speak or delayed speech

¦ Avoiding eye contact

¦ Wanting to be alone

¦ Restrictive and repetitive behavior

¦ Self-stimulatory behavior or “stimming” (flapping their hands, rocking their body, etc.)

¦ Hyper or hyposensitivity to sound, smell, taste, look or feel

¦ Avoiding or resisting physical contact

¦ Repeating words or phrases over and over

¦ Obsessive interests or fixation on an object or activity with abnormal intensity or focus

¦ Difficulty understanding or expressing empathy or emotion

Examples of restricted and repetitive behavior could include opening and closing a door 25 times, or spinning around in a circle, Dr. Adreon said. An obsessive interest or fixation could be a child’s focus on knowing everything about dinosaurs, to the exclusion of other interests.

Diagnosis

There is no medical test to diagnose autism, Dr. Morrier said. There are a group of specific behaviors that you look at in evaluation, in two main areas: “You’re looking at deficits or issues with social communication and social interaction and then the presence of restricted and repetitive behaviors and interests.”

Each person will be different, he said.

That’s why they say, “If you’ve met one person with autism, you’ve met one person with autism,” he said. The quote, oft repeated by those in the field when trying to explain ASD to others, speaks to the diversity within the autism spectrum. It is from Dr. Stephen Shore, an autism advocate who also has autism.

To meet diagnostic criteria for ASD, according to the fifth and most recent edition of The Diagnostic & Statistical Manual of Mental Health Disorders (DSM-5), often called psychiatry’s “bible,” a child must have persistent deficits in each of three areas of social communication and interaction, plus at least two of four types of restricted, repetitive behaviors.

You can also have a spectrum within a person with autism, Dr. Morrier said.

“So they could have a genius level IQ , several Ph.D.s, but they can’t hold down a job,” because they’re not able to interact with someone or they’re not able to understand when the boss tells them to do one thing for a client one way, but do it differently for a different client the next day.

“I’ve had some adults tell me that one of the reasons they can’t have a job is because they can’t stand listening to other people breathe,” Dr. Morrier said. They are hypersensitive to the sound of breathing but not able to figure out how to compensate for it to ease the situation, as in: “OK, if I can’t stand this person breathing, maybe I’ll just sit somewhere else.”

Socially, they might also have difficulty understanding nonverbal behaviors and cues. For example, standing too close to someone — not understanding there is such a thing as personal space, Dr. Morrier said.

“If you back away, they will get right up to you again.”

There is a 3-year-old child in his preschool program who likes to touch other kids’ ears, Dr. Morrier said. When his classmates tell him to stop, he doesn’t understand and thinks they are playing with him. “So he keeps doing it.”

Numbers increasing

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.

Psychiatrist Leo Kanner (1894-1981) was really the first to describe autism after working with a set of children in his practice at Johns Hopkins University in Baltimore. Kanner published an academic paper in 1943.

Meanwhile, in Austria, pediatrician Hans Asperger (1906-1980) was seeing similar symptoms to Kanner’s group in the children he was studying.

Asperger published his own paper in 1944, describing what later became known as Asperger’s syndrome. However, his group had stronger language skills and higher intellectual capability than what Kanner observed.

Kanner also came up with the theory that autism was caused by cold, unemotional mothers who could not connect with their children, later known as “refrigerator mothers.”

The remedy?

Remove the child from the debilitating “cold” parenting and place him or her in an institution.

Psychologist Bruno Bettelheim popularized the theory in the 1950s and ’60s. The theory was debunked in the 1970s.

Autism was first presented as a spectrum of conditions in the fourth edition of the Diagnostic & Statistical Manual of Mental Health Disorders in 1994.

The fifth edition (DSM-5) in 2013 consolidated four previously independent diagnoses into one umbrella diagnosis of “autism spectrum disorder”: Autistic disorder, Asperger syndrome, pervasive developmental disorder-not otherwise specified (PDD-NOS) and childhood disintegrative disorder.

Genetics play a role

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.”

Males are diagnosed with ASD four times more frequently than females.

There is discussion that one reason might be that females are good at camouflaging their symptoms, and the focus has been more on males and their types of interests, Dr. Morrier said. “We don’t know if that’ll change over time as we get better at identifying these females.”

Brains work differently

Research is showing more and more that the brains of people with autism are not different but they work differently, Dr. Morrier said.

Speaking of his own brain, Dr. Morrier said if an MRI or CT-scan were being taken while he was having a social conversation, the language part of his brain would light up.

For someone with ASD, it would be more the analytical side of the brain that lights up.

“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.”

Latest developments

These are the latest areas of study in understanding the spectrum.

How early can you diagnose? “We know the younger you start treatment, the better your outcomes are going to be,” Dr. Morrier said. “So how young can we go? “

Boys and girls: The differences between boys and girls with autism over time is being researched.

Adults: What do adults need? A lot of the research in the 1980s, 1990s and even the early 2000s was geared toward kids, Dr. Morrier said. “And we realized kids grow up. And you spend the majority of your life in adulthood, not as a child.” The emphasis now is on what kind of programs need to be developed to help adults be successful out in the world, he said.

Causes: What are the causes of autism? A lot of adults with autism are opposed to this, Dr. Morrier said. They don’t want to participate in genetics research because of the view that if you know the cause you can prevent it, leading to the fear of a eugenics agenda.

Undiagnosed adults

Could there be a lot of adults out there with undiagnosed autism?

“Absolutely,” Dr. Adreon said. The University of Miami-Nova Southeastern University has a specialty assessment clinic and they are seeing adults. Some might have previously been diagnosed with ADHD, treated for anxiety or depression or maybe misdiagnosed with schizoid personality disorder or obsessive compulsive disorder, she said.

At the Emory Autism Center, Dr. Morrier said, the adult clinic sees a lot of people in their 20s, 30s and 40s. “The oldest person I actually diagnosed was 65,” he said. When the man called, Dr. Morrier asked him why he wanted a diagnosis. What would a diagnosis get him at that age? The man replied, “It would help explain my life,” and why he had problems in certain areas. “I thought, OK, that makes total sense,” Dr. Morrier said.

Getting rid of stereotypes

Dr. Adreon would like to dispel the stereotype that people with autism don’t have emotions.

“I find that sometimes they might have difficulty expressing their emotions or showing their emotions in typical kinds of ways,” she said. “But one of the things I think we’ve learned, especially from people with autism who can tell their story, is that they do feel emotions very deeply.”

Studies have shown that they’re attached to their parents and that they care for people in their lives, she said.

One way we can learn more about the way people with ASD think and feel, and find out what kind of support they need, is simply to have them speak for themselves.

“Self-advocacy is great,” Dr. Morrier said. However, you have to make sure those listening understand that this is one person’s opinion. The self-advocate is not speaking for the autistic community, but telling his or her life journey.

One such advocate is Ethan Lisi, a university student in Toronto, Ontario, who in a remarkable 10-minute Ted Talk posted in April 2020, talked about what it’s really like to have autism. He describes his experience with ASD, and tries to raise awareness and dispel stereotypes.

One stereotype is that people with autism lack empathy, but that’s not true, Mr. Lisi said. He actually has lots of empathy — he’s just not good at showing it.

“Emotional expression, however much or however little, is difficult for me,” he said. “That is because I am bursting inside with every single emotion one feels at all times. So of course I cannot express it that way. … Whether it be receiving an awesome birthday gift or listening to a tragic story on the news, I cannot really express my reply without bursting, so once again I have to mask it in order to appear normal. My inner feelings are unlimited, but my mind only lets me express extremes or nothing.”

The influence of neurodiversity

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.”

The viewpoint has become a topic of controversy among those in the autism community who say the focus on neurodiversity emphasizes the abilities of those at the higher end of the spectrum and downplays the needs of those at the other end, who can have profound disabilities.

In his Ted Talk, Mr. Lisi says he supports the concept of neurodiversity as described in the New York Times best-selling book, “NeuroTribes: The Legacy of Autism and the Future of Neurodiversity,” by author Steve Silberman. The book has been credited with helping promote the concept of neurodiversity in the public sphere.

“If autism was seen as part of a natural human spectrum, then the world could be designed to work better for autistic people,” Mr. Lisi said. “I am not ashamed of my autism. I may not think like you or act like you, but I am still human and I am not diseased.”

Dr. Morrier and Dr. Adreon also support the concept of neurodiversity.

There’s all kinds of differences among people, Dr. Adreon said. “Autism spectrum disorder might be one, but there’s other kinds of conditions and just different ways our brains function.” Rather than assuming everyone should be the same, this recognizes there are different things that different people can bring to the table and to our communities, she said.

Dr. Morrier believes the world is starting to understand that people are different and do not interpret things the same way, interact the same way or learn the same way.

“So instead of saying, ‘Because you’re different than me, there’s something wrong with you,’ we need to have it be, ‘How can we work together to better the world for all of us ?’

“And that’s why neurodiversity is so important.” ¦

One response to “Understanding autism”

  1. The blog’s explanation about understanding autism is so informative. Thanks, author, for shedding light on this important topic. It’s crucial to raise awareness and promote understanding.

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