More than a disorder: Understanding the autism spectrum through the sufferer’s eyes

This story was produced in collaboration with Florida Weekly.

SOUTHWEST FLORIDA – Like many teenagers, Sean Sullivan loves video games and sports.

“I like to watch golf, hockey. I play baseball, ”said Sean.

Sean is 18 years old and will be a high school student at Cape Coral High School.

He dreams of becoming a firefighter.

“I want to help save people,” said Sullivan.

There is a lot you can learn about Sean before you even find out he has autism.

“He was officially diagnosed when he was about 5 or 6 years old,” said Sean’s mother, Rhonda Rainer.

Rainer said she discovered the signs much earlier.

“He was speech-delayed, he left at a late age, just a lot of the ear tags,” said Rainer.

Rainer was and is a teacher, so she knew what to look out for.

“He’s been voting almost every day and for those of you who don’t know it is the repetitive motions. Sean bobbed his upper body back and forth almost every day, almost like a stress reliever. He just needed this sensory input, ”said Rainer.

Sean’s older sister Rebecca said she remembered noticing unique things about him when she was young.

“Probably when he was about two or so, I was about seven, he had a breakdown and doing things I couldn’t remember as a kid,” said Rebecca.

But Rainer said she had to fight doctors for a diagnosis for years because Sean did not meet all the qualifications that were available at the time.

“Sean would make eye contact with myself, with his sisters, he is loving, he likes hugs,” said Rainer.

He’s always shown that affection, but some people with autism don’t.

“No two people in the spectrum are exactly alike,” said Rainer.

Some have learning difficulties. Sean is only a few years behind school.

“He likes math, he doesn’t like English,” said Rainer.

Rainer said on an emotional level that Sean was about six years old. For example, he still loves cartoons. But that doesn’t stop Sean from interacting with people his age.

“He’s my best friend, honestly. I talk to him more than anyone else. We play video games together. I can’t imagine my life without him, ”said Rebeca.

One of his biggest challenges is communication. Sean says he has a hard time asking for help and speaking to people, all things that his family fully accepts.

“We don’t want to change our son for the world. We want the world to change for our son – or for everyone with autism, ”said Rainer.

“I want to be treated just like others,” said Sean, a common thing you will hear in the autism community.

You want to be accepted in society.

“Autism is not a curable disease. It’s part of you, “said Rachel Blanchard, who also overcomes autism.” I was three years old when I was diagnosed. My parents struggled to find a family doctor who would listen to them to see what happened to me was happening.”

Fast forward to today – Rachel is 26 years old and after moving to Florida she attended Cape Coral Technical College.

She is a digital designer and fan fiction writer.

Rachel lives with her family, who support her.

“It’s hard to be independent, but that doesn’t mean I can’t stop becoming independent,” she said.

Rachel said she had learning difficulties growing up. She stated that one of her biggest hurdles was her auditory processing.

“It’s hard to interact with someone when the music is loud and it’s hard to process what they’re saying. Sometimes I get a little scared, ”she said.

Fear is something that many struggle with whether or not they’re on the spectrum. It’s just one example of how much more sociable people with autism are than you think.

“You can be different, or you know we can all be different. We are all different in society. If we were all the same, the world would be boring, ”said Cape Coral’s mother, Samantha Begle.

Begle is a mother of four children. Two of her sons were diagnosed with an autism spectrum disorder.

“It’s Bentley and Aston that have been confirmed to have autism and we’re waiting for the results from Cheyenne,” she said.

Bentley is nine years old and Aston is six.

“And I have one who is pending an ADOS test,” said Begle of her 10-year-old daughter Cheyenne. “I have probably denied her more than anyone else. I feel guilty because I feel like she masked it. “

ADOS, or Observation plan for the diagnosis of autism, is a standardized diagnostic test for Autism Spectrum Disorders. Since 2000, it has become one of the standard diagnostic tools that both school systems and independent clinicians use in screening for developmental disorders.

“I have probably denied her more than anyone else. I feel guilty because I feel like she masked it, ”said Begle.

She had her sons tested earlier because of her sons’ other medical needs. She noticed core meltdowns and other signs. Although their sons with autism are siblings, they have vast differences. In the autistic community, some people are non-verbal or only verbal to a limited extent.

“Aston, he can have his moments, a lot of his topics are communication. He’s having trouble speaking and we looked into speech therapy, ”said Begle.

Bentley, on the other hand, could be viewed as “more highly functional”. Begle said he had no problems speaking and attended the gifted school.

“He gets more social anxiety. It somehow switches itself off or it could go completely opposite. He’s always been what you call a behavioral kid, ”she said.

As Begle mentioned, she feels guilty about not getting Cheyenne tested earlier.

“I think we didn’t see the same signs and symptoms with Cheyenne as we did with the boys,” she said.

But that’s not uncommon. Statistically, girls are underdiagnosed by a ratio of 4: 1. Most research suggests that their differences in signs and symptoms and tests are more centered on boys. This fact alone is just one example of how broad the spectrum of autism is and how much more the world has to understand.

“You can’t outdo them! You just can’t. You really have to look at the child, not the diagnosis, ”said Sean’s mother Rhonda Rainer.

By definition, spectrum is a word used to classify something on a scale between two extremes.

“As for a lineage, or the ‘more autistic’ or ‘less autistic’, I don’t think I would use that to classify autism,” said Rainer.

Autism is known as spectrum disorder because there are differences in people with the form of neurodiversity. But it’s not as easy as it sounds. Just because people have similar traits related to autism doesn’t mean they are the same.

“You meet a person with autism … you met a person with autism,” said Rainer.

Instead of looking at the spectrum like a line, some suggest looking at it as a color wheel. ABC7 spoke to the founders of the Family Initiative, which has just opened a new one, about the concept Autism Support Center a few months ago.

“When you think of a circle and all the different areas of it, some people can be high in red and deep in blue,” said Anjali Vandrie, vice president of the family initiative.

These different colors present different challenges and each person with autism has their own unique hue.

“Are there major areas that most of our diagnosed individuals have? Yes, but what it looks like for each person is completely different, ”said Vandrie.

The Autism Support Center is aimed at children and young adults on the autism spectrum. They have playgroups for kids, hangouts for teenagers, support groups for parents, and resources for young adults and people of all ages.

“Our mission from the start has been to genuinely find a continuum of care that meets needs from early detection and identification to young adults and employment agencies,” said David Brown, president and co-founder of the Family Initiative.

For the families, they just want their children to know that they can still be successful.

“Ultimately, it’s a possibility that I could even be on the spectrum. I also recently had myself tested. It’s more so that I can show my kid, yes, I’ve had my struggles, I’ve worked, I have my own business, I’ve had all of these things and it didn’t hold me back. You can do the same, if not more, ”said Begle.

Rainer is now teaching children with special needs and helping these families get the help they need.

“It’s my fight. It’s my passion now, ”she said.

You and those who live with autism every day know firsthand that these are people – people with autism.

“I mean without her, who am I if not Rachel?” Rachel said.

Rainer said she and her family try not to get too involved in the terms. There is some disagreement as to whether this community should be labeled “autistic people” or “people with autism”. Sean describes himself personally as an autistic person.

“I’m used to person-first language because we’re teachers. We’re trained to use that language, ”said Rebecca, Rainer’s older daughter.

She is more interested in addressing inequality and judgment.

“In the past, people have said ‘he doesn’t look like he has autism’. There is no typical look, ”said Rebecca.

Rebecca and her mother feel that more people are learning what autism is.

“So the awareness is there, we just want acceptance now,” said Rainer.

Some suggested ways to help people with autism are just by saying hello to them. You can only wave or not say back, but that’s fine. Some people on the spectrum have different ways of communicating.

Families also told ABC7 that there will be a meltdown. When you see a child having a child in public, they ask you not to stare or judge them – mind your own business and think about what happens, possibly beyond the control of their parents. Try activities they like and take the time to get to know them. It can take patience. Be polite.


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