Public views of autism have changed over time

The autism spectrum is a unique and often difficult experience to live with. Over the years, knowledge about the details of this disability has increased, along with its visibility in society.

According to Dr. Barry Prizant, the director of Childhood Communication Services in Cranston, RI, and an adjunct professor for the Center for the Study of Human Development at Brown University, the two main factors affected by autism are a person’s social interaction and communication skills.

 “Once language skills are developed, there’s still confusion about social rules,” said Prizant. “We often see kids having problems regulating their emotions. They can become very overwhelmed… this can be due to the sensory world, or just things that don’t turn out how they expect.

He cited an example of an old client of his who is now in her 30s and able to express herself better. The last time they spoke, she told him that if a person reaches out to her physically, she’s unable to interpret if they intend to hit her or hug her.

Prizant also commented that symptoms of autism can usually lessen or worsen, depending upon the environment they are raised in.

“The way the parents make sense of autism is the biggest factor,” he said.

“I think the more people with autism feel good about themselves, the more they like other people as opposed to being stressed out,” he continued. “That helps them be in the mainstream, and they interact with people, which in turn gives them more experience with learning to be social.”

Prizant also commented on the sensitivity issues that many autistic individuals are dealing with. This factor can also make interacting with the world quite difficult.

“Some people [with autism] are hypersensitive to noise, touch and smell,” he said. “They see the world as a very threatening place. It’s unpredictable, with loud noises such as fire drills and sirens they can’t predict… [To them] the world is not a safe place to live in.”

Over the years, the presence of autism has been on the rise. In February of 2007, the Centers for Disease Control Prevention released a report regarding the incidence of autism. The report stated that one in every 150 American children have an autism spectrum disorder, according to the Autism Society of America (ASA). This translates to about 1.5 million Americans right now, and counting.

The U.S. Department of Education, along with other government agencies, predict that the number of cases of autism is increasing by 10 to 17 percent per year, and the ASA predicts there will be 4 million Americans with autism in the next 10 years.

The circumstances of raising an autistic child can put a strain on everyone in the family, especially parents who have just learned of their child’s disability. Jan Randall, mother of 23-year-old Andrew of Seekonk, recalls realizing that her son was not developing normally.

“Up until 20 months old he had hit all of his milestones,” she said. “I started to notice he was dropping words and not adding any new ones.” When Randall expressed concern to her pediatrician about Andrew’s digression in 1987, she was told it was completely normal. She didn’t investigate his case further until she noticed further declines in Andrew’s development.

“He was getting steadily worse,” she said. “He became completely echolalic. He started losing eye contact and having meltdowns. I was left to wonder, ‘what the hell is wrong with him?’ It was a nightmare.”

Eventually, Randall had her son evaluated by specialists, and he was diagnosed with autism shortly after turning four.

Keri Bowers, mother of 20-year-old Taylor Cross of Thousand Oaks, Calif., recalls seeing problems in her son as early as four months old.

“At four months, my primary caregiver referred me to a neurologist thinking something was going on,” said Bowers. She described feeling “in the dark” when looking for an explanation for her son’s behavior. At first, several different diagnoses, including mental retardation and obsessive-compulsive disorder, were presented as the answer.

“I even had in writing: mother’s failure to bond with child has caused him deep psychological distress,” said Bowers. Taylor wasn’t officially diagnosed as autistic until age six.

Both Bowers and Randall commented on how much better they felt after finding the answer to their long sought-out question.

“Giving it a label that finally distinctly explained why Taylor was so odd, why his speech was delayed and why he had sensory and behavioral issues helped me overcome the death of my dream,” said Bowers. “I was devastated, but also relieved because I had a focus and could explore.”

Randall said she was overwhelmingly relieved to at least have a direction to go in, even though back then there was little information out there.

She was also able to comment on the evolution of the general public’s knowledge of autism throughout her son’s life.

“When he [Andrew] was young and would freak out in public,” she said, “I got terrible comments from people who had absolutely no idea that this little preschooler had a severe disability, and that was really hard… I would get so angry at people.”

As Andrew got older, the general perception of autism became a little more positive.

“When he was nine or ten,” she said, “people would say ‘oh, what’s his special talent?’ They thought he was Rain Man.”

Randall concluded by saying that in this day and age, people are generally much more tolerant and understanding of an autistic person’s situation.

Dr. Prizant mentioned that as times have changed, autistic individuals are now more open than in the past, which can make it easier to help them.

“Something we didn’t have for many years is people with autism telling us how they perceive the world,” said Prizant. “We can learn from them, and what can be more valid than hearing directly from the source?”

Jeffrey Snyder, of Seekonk, is very open about his disability, and expressed what he feels are his most distinguishable autistic traits.

“I need help with simple things,” said Snyder, “like getting adjusted [to new situations].” He also mentioned how he sometimes finds it difficult to process everything a person is saying to him.

At 19, Snyder is currently a part time student at Bristol Community College in Fall River, and a part time employee at the Borders bookstore in North Attleboro. He hopes to work in the travel industry in the future.

Taylor Cross has also come to terms with his disability.

“I just took it as it came along,” he said while explaining how he learned to live with autism. “When I was about 13 it sparked a depression, and it was a hell of a depression. But [over time] I grew smarter… if that makes any sense.”

Cross is an aspiring filmmaker, and his 2006 documentary “Normal People Scare Me” explores what it’s like to live with autism.

Jan Randall also commented on how her son is very aware of himself and can understand how he affects those around him.

“As severe as his autism is, he’s not stupid,” she said. “He knows when people are staring at him. He knows when he’s making a spectacle of himself, but he can’t really help it. When people are turning around to look at him, you can tell he feels self-conscious and guilty.”

Generally, there’s been a positive shift regarding autism. People in general tend to be much more understanding, according to Dr. Prizant. He has also intimated that anyone can learn a great deal from autistic individuals, and that they really aren’t that different from the rest of the world.

“People with autism are having natural human reactions to being confused and overwhelmed in situations,” he said. “A lot of their behavior is human behavior, and if we were under the same circumstances… any of us would react that way.”

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