Imagine, for a moment, that you cannot speak. Maybe you have had laryngitis and have experienced losing your voice. But now imagine that you cannot write, either, even to send a text message.
Imagine that the people around you talk to you all the time, but their words are meaningless. Imagine that you can’t understand their feelings, either. The concepts of happy, sad or angry mean nothing. But you have feelings. You feel things—emotional and physical—but have no way to express those feelings to anyone around you. You are in the world of autism.
The 2004 Academy Award-nominated short documentary Autism is a World chronicles the life of Sue Rubin, who was labeled and treated as mentally disabled for the first 13 years of her life. Unable to communicate verbally, Sue made continuous repetitive noises and gestures, typical of the mentally disabled. She would act out in tantrums and was obsessed with water and spoons, carrying plastic spoons with her everywhere she went. As a means of comforting herself, she spent hours at the bathroom faucet catching water in a spoon.
When Sue was 13, she received a keyboard to aid her in communicating. The keyboard allows the user to type in words, and the device reads them out in an electronic voice. Her caregivers expected her to eventually learn to tell them “yes” or “no” in answer to direct questions. What they discovered was an intelligent woman with an IQ over 130, who just needed a way to communicate with the outside world. Through her keyboard, using painstakingly slow, one-finger typing, Sue learned to express the thoughts and feelings that had been bottled up inside her for all those years. She went on to graduate from high school and attend college independently. She wrote the screenplay for her documentary.
Ocala resident Sonja Ferrall, 14, is much like Sue was at the same age. Very limited verbally, she can understand others but can only reply “yes” or “no” or with scripted sentences that are the means to an end, such as “I want a drink.” Sonja needs full-time care; she can’t yet take care of her personal hygiene. She plays on the computer for hours, drawing or looking at pictures. She picks compulsively at her arms and legs, creating sores in her skin.
Sonja engages in constant repetitive movements and sounds that would lead any bystander to assume that, like Sue Rubin, Sonja must be mentally disabled. Puberty, with its hormonal swings, has wreaked havoc on Sonja, as it does most teens with autism. She acts out in aggressive behaviors that can cause harm to herself or others and has come close to being barred from attending classes at Hillcrest School, a school for exceptional students.
Sonja watched Autism is a World with her caregiver Lauren, who is working with her on communicating through writing. Afterward, Lauren asked Sonja whether she has autism. Sonja wrote, “Yes.” When asked what she thinks about autism, Sonja astounded her family by writing, “Autism is an enigma.”
Autism is a neurological disorder that affects the parts of the brain responsible for com- munication and social skills. No one really knows what causes autism. There are groups that blame childhood vaccinations, as the onset of symptoms is usually around the time toddlers receive the most shots, but research has not supported this theory. Recent studies do indicate biological or neurological differences in the brain and abnormalities in the structure of the cerebellum and certain brain cells. Studies are being done to try and find a genetic link, as some families tend to have a pattern of autism or related disabilities. Autism spectrum disorder (ASD) refers to pervasive developmental disorders (PDD), including autism, Asperger’s syndrome and PDD-NOS (not otherwise specified or atypical autism.)
Because autism is a spectrum disorder, children may exhibit a large range of behaviors. There are varying degrees of autism, ranging from very low-functioning individuals who are uncommunicative, show aggressive behaviors and require assistance to perform tasks of daily living, to high-functioning individuals who are verbal, able to live independently and hold a job. Children with autism are usually very sensitive to stimuli, resistant to change and unable to empathize with others. Higher-functioning children may have difficulty socializing with others their age and may only be interested in topics they are focused on.
There is no specific test for autism; diagnosis is made after hours of observation and interaction. It is most commonly diagnosed by age 2 or 3 when parents and pediatricians have noticed that something just isn’t “right,” or age 6, when entering school requires a diagnosis for placement. Sometimes, a normally progressing infant, who is reaching milestones on time, suddenly slows when verbal skills usually develop. Sometimes, children who begin to speak their first words on time lose the words they’ve learned and retreat into silence.
Sonja started out progressing normally and, at around 15 months, began to withdraw.
“All her milestones were reached up until 15 months, and then she just shut down,” Theresa Ferrall, Sonja’s mother, says, “At 18 months, the pediatrician asked me how long she had been acting like this; she was in the corner, drawing a circle over and over and making a repetitive noise. I kept asking if she would be able to go to school, and they couldn’t tell me. It was devastating.”
Jennifer McBride, a pre-kindergarten Exceptional Student Education (ESE) teacher at Maplewood Elementary School in Ocala, has been working with children with autism for almost 10 years. She currently teaches 16 three, four and five year-olds in a self-contained ESE unit. Some of her students will go on to regular kindergarten classes, while others will be in ASD self-contained classes, spending time each day with ESE teachers in small groups. Children with autism need structure in their routine, and they do not react well to change.
“Everything you tell them must be clear, and consistency is huge,” McBride says. “We don’t change the schedule from day to day. I ask the same questions every day, ‘What month are we in? What day is today?’ We do it the same every day until they learn how to answer.”
For non-verbal children, using picture icons to associate words with pictures is crucial. McBride’s classroom has thousands of laminated pictures representing virtually any word her students may need to learn. She’s happy to share these with her students’ families to use at home.
“We have pictures for every concept we are teaching,” she says. “For children with autism, words just flow by their heads, nothing is attaching, so showing pictures and modeling day after day is how they learn. With the picture exchange communication system, we pair pictures with the actual item. We show a student a picture of a cracker and an actual cracker, so they eventually learn if they want a cracker, they choose that picture.” This becomes their method of communication at this early level.
Another method used is short task activities paired with rewards, such as “Put the puzzle piece here. Great job; here’s a sticker.” Repeating that process, step by step, gradually teaches children with autism how to follow direction and complete a task. Parents should use the same techniques at home for consistency.
“At school, we go through the line to get our food, take our tray to the table and sit down. We have shown them, using visuals, this is the order we will do this, and we do it every day,” McBride says. “The parent might say, ‘I’ve never been able to get him to sit at the table,’ so we show them how to use the visuals to explain the order of tasks: This is what is going to happen in order to get to eat dinner. Then, do it the same every day.”
Autism advocate and the mother of two boys with autism, Sylvia Miller has used the picture exchange communication system so well in her home that her boys will be able to live somewhat independently when they are both grown. Kibriyyil, or Kibby, is an 18-year-old Hillcrest student and is non-verbal. His younger brother Shukriyyil, 16, talks a little and understands others. He is a student at Forest High School. Miller spent seven years training the boys with the picture exchange system. Every room in her home has picture icon boards to remind the boys in what order tasks must be completed.
“They have been taught to live in this home using visuals. They know how to take care of their personal needs; they set their own schedules, fix their own meals, keep the home clean and do their laundry,” Miller says. “They won’t be able to live totally independently but with minimal support. The level of care that you get from others is better if the individuals being served can do more for themselves. It’s easier to find people to live with them and take them out in the community.”
Their ability to do things for themselves also contributes to them having less behavior problems, which also makes it easier to get help. Miller’s plan is for her boys to continue living in the family home with assistance, and she will move out to give them independence.
McBride insists children with autism can learn. The key, she says, is finding what motivates each individual child, and the younger you start working with them, the better.
“It’s about finding what they like; what motivates them to learn. If they like trains, teach them with trains. If they like balloons, use balloons. Motivation is hard to find with some kids. If we don’t find the motivator, they don’t care,” says McBride.
Stacy Sansevere discovered she could make strides in teaching her son Garian by focusing on his love of game shows and numbers. Garian is a higher-functioning, verbal and sociable 10-year-old student at Maplewood Elementary who loves to play game show host.
“Whenever I have trouble getting through to him, I go back to thinking, ‘What can I do to put this on his level?’” Sansevere says, “I spent last summer teaching him to eat and order from a menu. I spent hours working with him before I thought to make it into a game show.
“People say you’ve got to have patience, but that’s not it. It’s understanding. Once you understand how they learn, patience just comes. They have it all in there, it’s just getting it
out. You just have to figure out what it is that will unlock it for them.”
Garian didn’t always talk. “As soon as we got the diagnosis, my mom and I signed up for sign language and started to sign with him,” says Sansevere. “His speech therapist told us that if he has the ability to speak, he will eventually because it’s easier than signing. There was one instance where I had the cookie jar, and he kept signing cookie. I’d say ‘cookie’ and eat a cookie. He’d cry, point and sign cookie, and I’d repeat over and over until I was almost sick from eating cookies. Finally, he made an attempt to verbalize ‘cookie.’ I celebrated and gave him the rest of the jar of cookies as his reward. He got it.” Sansevere thinks parents are often too quick to push for mainstreaming kids with autism in school.
“I’ve never pushed for Garian to be mainstreamed; it’s more important that he get the help and attention he needs than to get a label of mainstream,” she says. “I see a lot of parents pushing for mainstreaming, and I think a lot of times that’s more for the parents than the children.” For those participating in mainstream activities, she believes children will do better if regular children are better educated on the needs of the children with autism around them.
“We broke out of our comfort zone last summer and put him in a two-week summer camp for regular kids at the Discovery Center.” Unfortunately, there was an incident, and camp directors felt Garian shouldn’t continue.
“But I went in and talked to them and explained that if the other kids knew about his disability, they probably would have treated him differently,” Sansevere says, “So they allowed me to educate the teachers and children as to how the whole event could have been prevented. If you ask kids for their help, they will respond, and that’s what I did at Maplewood. I asked if there was anyone willing to help him out, and the students stepped right up.”
Parents of children with autism hope that public education and increased awareness will help raise resources available to them, as well as raising an awareness of what autism looks and sounds like. There is a great need for funding of medical care, behavioral education, respite care and other services. Private behavioral services, like Step by Step in Ocala, offer behavior training and community outings for children with autism but are funded through private payment and private insurance. Currently, there is a five-year waiting list for Medicaid waivers for services not covered by Medicaid. The public needs to see that these services make a difference and that children with autism can and do learn, so funding programs and services is money well spent.
When Sonja wrote her first words for Lauren, her mother thought, “Oh my gosh, here’s a kid who can’t even verbalize her most basic needs but can write enigma.” Farrell wants people to remember that the next time you are in a store or restaurant and you see a parent asking a screaming child, “Tell me what you want,” don’t assume the parent is giving in to a tantrum and give them a look of disgust. That parent may simply be trying to encourage the child to use words in order to help them unlock their world.
Ocala Style Magazine, April, 2012