More than a disorder: understanding the autism spectrum through the eyes of the diagnosed
This story was produced in partnership with Florida Weekly.
SOUTHWEST FLORIDA – Like many teenagers, Sean Sullivan enjoys video games and sports.
âI like to watch golf, hockey. I play baseball, âSean said.
Sean is 18 and is going to be in his final year at Cape Coral High School.
He dreams of becoming a firefighter.
âI want to help save people,â Sullivan said.
You can learn a lot about Sean before you even find out that he has autism.
âHe was officially diagnosed when he was around 5 or 6 years old,â said Sean’s mother Rhonda Rainer.
Rainer said she spotted the signs much earlier.
âHe had a speech delay, he walked in old age, just a lot of ear cues,â Rainer said.
Rainer was and still is a teacher, so she knew what to look for.
âIt was stimulating almost every day and for those of you who are unfamiliar, the repetitive movements. Sean was shaking his upper torso back and forth almost every day, almost like a stress reliever. He just needed that sensory input, âRainer said.
Sean’s older sister, Rebecca, said she remembers noticing unique things about her when they were young.
âProbably when he was about two, I was seven, he had seizures and did things that I don’t remember as a kid,â Rebecca said.
But Rainer said that for years she had to fight with doctors for a diagnosis because Sean didn’t meet all the criteria that existed at the time.
âSean would make eye contact with myself, with his sisters, he’s loving, he loves cuddling,â Rainer said.
He’s always shown this condition, but some autistic people don’t.
âNo two people on the spectrum are exactly alike,â Rainer said.
Some have learning difficulties. Sean is only a few years behind in school.
âHe likes math, he doesn’t like English,â Rainer said.
Rainer said emotionally, Sean is about six years old. For example, he still loves cartoons. But that doesn’t stop Sean from interacting with people his age.
âHe’s my best friend, honestly. I talk to him more than to anyone else. We play video games together. I can’t imagine my life without him, âsaid Rebeca.
One of its biggest challenges is communication. Sean said he has a hard time asking for help and talking to people, all of which his family fully accepts.
âWe don’t want to change our son for the world. We want the world to change for our son – or for anyone with autism, âRainer said.
âI want to be treated the same as everyone else,â said Sean, a common thing you will hear among the autism community.
They want to be accepted into society.
âAutism is not a disease that can be cured. It’s part of who you are, âsaid Rachel Blanchard, who also overcomes autism. âI was three years old when I was diagnosed. My parents struggled to find a family doctor to listen to them and see what was happening to me.
Fast forward to now – Rachel is 26 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 help support herself.
âIt’s a little hard to be independent, but that doesn’t mean I can’t stop trying to gain independence,â she said.
Rachel said she had learning difficulties growing up. She explained that one of her biggest hurdles was her hearing processing.
âIt’s hard to interact with someone when the music is loud and it’s hard to understand what the person is saying. Sometimes I feel a little anxious, âshe said.
Anxiety is something that many struggle with whether they are on the spectrum or not. This is just one example of how people with autism are easier to understand than you might think.
âThey may be different or you know we can all be different. In society, we are all different. If we were all the same it would make the world a little boring, âsaid Cape Coral’s mother, Samantha Begle.
Begle is a mother of four. Two of her sons were diagnosed with autism spectrum disorder.
âIt is Bentley and Aston that have been confirmed to be autistic and we are awaiting the results from Cheyenne,â she said.
Bentley is nine and Aston is six.
âAnd I have one that’s waiting for TEEN tests,â Begle said of her 10-year-old daughter, Cheyenne. âI was probably more in denial with her than any of them. I feel guilty because I feel like she covered it up.
ADOS, or Autism Diagnostic Observation Schedule, is a standardized diagnostic test for autism spectrum disorders. Since 2000, it has become one of the standard diagnostic tools that school systems and independent clinicians use for screening for developmental disorders.
âI was probably more in denial with her than any of them. I feel guilty because I feel like she covered it up, âBegle said.
Due to her sons’ other medical needs, she had them tested earlier. She noticed collapses and other signs. Even though her autistic sons are siblings, they have big differences. Among the autistic community, some people are limited non-verbal or verbal.
âAston, he can have his moments, a lot of his problems are communication. He is having trouble speaking and we had to deal with speech therapy, âBegle said.
On the other hand, Bentley could be considered a âsuperior functioningâ. Begle said he had no problem speaking and attended gifted student programs at school.
âHe has more social anxiety. It somehow stops or it could go the complete opposite. He’s always been what they call a behavioral child, âshe said.
As Begle mentioned, she feels guilty that she didn’t get Cheyenne tested sooner.
âI guess with Cheyenne we didn’t see the same signs and symptoms, I guess, as with the boys,â she said.
But it is not uncommon. Statistically, girls are underdiagnosed at a ratio of 4: 1. Most research indicates that their differences in signs and symptoms and testing are more focused on boys. This fact alone is just one example of the breadth of the autism spectrum and everything the world has yet to understand.
“You can’t cut them into cookies!” You can not. You really have to look at the child, not the diagnosis, âsaid Sean’s mother Rhonda Rainer.
By definition, spectrum is a word used to classify something on a scale between two extremes.
âWith regard to a line, or ‘more autistic’ or ‘less autistic’, I don’t think I would use that to classify autism,â Rainer said.
Autism is called a spectrum disorder because there are variations among people who have the form of neurodiversity. But it’s not as easy as it sounds. Just because people have similar autism traits doesn’t mean they’re the same.
âYou meet a person with autismâ¦ you have met a person with autism,â Rainer said.
Instead of looking at the spectrum as a line, some suggest viewing it as a color wheel. ABC7 spoke about the concept with the founders of Family Initiative, which just opened a new autism center a few months ago.
âIf you think of a circle and all of the different areas of it, some people can be high in a red and low in a blue,â said Anjali Vandrie, vice president of Family Initiative.
These different colors represent different challenges, and each person with autism has their own unique hue.
“Are there any main areas that most of our people diagnosed have? Yes, but what that looks like for each person absolutely varies, âsaid Vandrie.
The Autism Support Center is designed for children and young adults with autism. They have play groups for kids, meetup groups for teens, support groups for parents, and resources for young adults and people of all ages.
âReally, it’s our mission from the start to truly find a continuum of care that meets the needs of early detection and identification through to young adults and work placements,â said David Brown, President and Co- founder of Family Initiative. .
For families, they just want their children to know that they can still be successful.
âAt the end of the day, it’s a possibility that I could even be on the spectrum. I recently got tested too. It’s more to show my kid, yes I had my struggles, I worked, I owned my own business, I had all of these things and it didn’t slow me down. You can do the same things if not more, âBegle said.
Rainer now teaches children with special needs and works to help these families get the help they need.
âThis is my fight. It’s my passion now, âshe said.
She and those who live with autism every day know that these are people – people with autism.
âI mean without that, who am I if not Rachel?â Rachel said.
Rainer said she and her family try not to get too caught up in the terms. There is some disagreement on whether to refer to this community as âautistic peopleâ or âautistic peopleâ. Sean personally defines himself as an autistic person.
âI am used to the language first of all because we are teachers. We are trained to use this language, âsaid Rebecca, Rainer’s eldest daughter.
She is more interested in the fight against inequalities and judgment.
âIn the past, people have said to themselves ‘he doesn’t look like he has autism.’ There is no signature look, âsaid Rebecca.
Rebecca and her mother believe that more and more people are learning what autism is.
âSo the awareness is there, we just want the acceptance now,â Rainer said.
Some of the suggested ways to help accept people with autism include simply saying hello to them. They might just say hello or not say hello, but that’s okay. Some people on the spectrum have different ways of communicating.
Families also told ABC7 that meltdowns will occur. If you see a child having one in public, they are asking you not to watch or judge them – mind your own business and consider what may be going on beyond the parents’ control. Try out activities they enjoy and take the time to get to know them, this can take patience. Be kind.