(Photo by Nancy Nelson)
Autism is a brain disorder which affects a person's ability to communicate, reason, and interact with others. It affects those afflicted with the disorder in a variety of ways and in different degrees of severity. Many times it is found in combination with other disabilities.
The word autism comes from the Greek "autos" which means "self". Autism and the term "autism spectrum disorder" are often used interchangeably and refer to three of five disorders known as Pervasive Developmental Disorders (PDD).
Autism is more common than most people think. The lifelong disability is more prevalent than childhood cancer, cystic fibrosis, and multiple sclerosis combined. One out of 166 babies born will develop some form of autism. That translates to 1.5 million Americans, both child and adult, who have the disorder today. Another 15 million Americans, such as loved ones, health care professionals, caregivers, and educators are directly impacted by the disorder.
The Harrison family of Cherokee is one of several families in the area affected by autism. Chad and Allyson Harrison first suspected something was wrong with their middle child, Griffin, when he was around eight months old.
They were concerned about his hearing, because he wouldn't respond to them. The couple went through the process of having tubes put in his ears. When that didn't seem to help they also began to notice that he wouldn't make eye contact. Then by the age of two he had no language skills, no babbling, no pointing or gesturing, no single words, and certainly no expression phrases or sentences. All signs indicative of autism.
Lack of language by age two is a major red flag for indicating the possibility of autism. There are other signs of autism that when combined with the lack of language skills are additional indicators for the disorder. In Griffin's case, he ceased making eye contact, flapped his hands repetitively, sustained odd play (he likes to watch only the credits at the beginning and end of a movie or television program), points to what he wants rather than speaking, and doesn't respond to verbal cues (acts as if deaf).
There are other signs of autism that fit Griffin's personality and looking back at photos of her son, Allyson Harrison, notices that up until around eight months of age, her son seemed to be aware of his surroundings and the people in his life. Sadly, she says it is like the light being on, but no one is home.
Griffin who is now four was found to have autism at age two, however, he will be officially diagnosed this month when he goes for testing. Life with autism presents physical, intellectual, and emotional challenges for everyone associated with the disorder.
A solid and specific routine is imperative to the daily life of a child with autism. For Griffin even simple things like going to the doctor or even the grocery store is overwhelming. He becomes over stimulated and has be on the go. He does not and cannot understand his behavior or how to communicate his feelings of what is going on around him.
Everywhere the family goes that deviates from ordinary routine requires some way to transition him into the idea that he is going someplace different. Since he loves shapes his mom tries to point out shapes on the places where they are going.
A recent visit to the doctors office was traumatic for him because the time spent in the reception area was too long and overwhelming for him. He wanted to leave in the worse way because he didn't understand. He began crying and acting out in frustration.
Because of his behavior, it seems as if he is out of control and his mom is sure people are wondering why she doesn't control him. With autism it doesn't work that way, and even when she explains to people that he has autism they still do not seem to understand. Events like that can and has left both mom and child in tears.
Griffin began attending the Early Childhood Learning Center earlier this year. Emily Shuberg, the special needs teacher at the center says in the beginning it was sort of chaotic for him. He would wander from one thing to the next not really knowing what to do. Over the summer months she was able attend specialized training in Sioux City through the Area Education Agency.
The training called TEACH showed Shuberg how to help Griffin in the classroom. Since Griffin is a very visual child they were able to utilize photos to help him communicate with them and they with him about his needs and what portion of the day was in progress. For example, when he is thirsty he will choose a picture of a drink and show it to his teacher. When it is time for lunch or some other activity, Shuberg shows him the corresponding photo and he understands and complies with what he is to do.
The next step is move from photos to drawn images such as clip art to help him associate and understand symbols, which will later help in the development of more advanced language skills.
The Harrison's are very pleased with the progress Griffin has been able to make since implementing the methods from the TEACH curriculum. He also has the assistance of a one-on-one teacher's aide to help him through his day at school. School provides Griffin with a sense of security from the structured routine and enables him to interact with other children his own age. The Harrison's both say he loves going to school with the other children.
In spite of the disorder most autistic children have specialized skills which can be built on when looking at their education. Griffin is very good with puzzles and matching and sorting objects, and being a visual learner will all help in his development.
Life with children is never the same for couples, and life with an autistic child throws in extra challenges. The social life of parents with autistic children tends to become strongly affected.
A recent example arose when the Harrison's attended a wedding. They had a baby-sitter lined up to take care of Griffin during the event. When that fell through they had to leave the wedding earlier than planned. Once again he would have been too over stimulated by the large crowd of people to stay in one place for any amount of time, become frustrated, and eventually act out because he doesn't understand or know how to communicate his frustrations.
Griffin's older sister Merrick is five years old and attends kindergarten at Roosevelt Elementary. She seems to take everything in stride, but her parents sometimes worry about her getting the "short end of the stick" because life seems to be all about Griffin. Her parents say she is very patient and is great at helping look out for her brother. Having Griffin as a brother also has helped her at school with other classmates who also have autism.
Griffin also has a younger brother, Ely, who is just 16 months old. Statistics show that autism is more prevalent in boys and families with one autistic child will have a ten percent chance of having another. So far Ely has not shown any signs of autism like Griffin did, but it is always in the back of the Harrison's mind.
Normally children are able to adapt to family dynamics but in families with autistic children it is the other way around. Families have to adapt to the child. The Harrison's take things day by day and say raising an autistic child takes a lot of thinking outside the box.
For example, it has to be okay to jump on the couch at home and it has to okay to have a mini trampoline in the living room decor, it has to be okay to have a specific place for him at the table, and it has to be okay for him to get up, move around, swing by his plate, grab a bite, and move on.
Chad Harrison says he tries to help with his abundance of energy by playing with the children on the floor. They wrestle and roll around and a great time. Everyday is an adventure and the couple couldn't imagine life any other way. They say they have been very lucky with Griffin because he seems to be always happy. That isn't always the case for some autistic children.
Beside the everyday living challenges that families with autistic children face there are other outside obstacles to overcome. One obstacle seems to be getting the correct diagnosis. Cheryl and Dave Brewer of Cherokee also have a son with autism, Nick, who is now nine years old. Although he is a higher functioning autistic child to road to his diagnosis proved to be a long one.
Their son was born three months premature so even though the family received assistance immediately it took some time to figure out the proper diagnosis. He was diagnosed with everything from mental retardation to learning disables, developmental disabled and even attention deficit hyperactivity disorder (ADHD). Nothing seem to fit until the family began using techniques to autistic children did they see an improvement and finally the correct diagnosis.
For the Harrison's, formerly getting the right diagnosis will mean better access to assistance programs. Autism is not a covered medical disorder so things that could be used to help Griffin have to come out of pocket. Like most families today, it is difficult to do living pay check to pay check.
Allyson Harrison, who has a degree in social work and human services knows there are programs available to autistic children and their families. The challenge often lies in being able to network and find those programs. Support groups are available to families with autistic children but there is no group currently in the Cherokee area. Families have to go to Storm Lake or Sioux City. Allyson Harrison is interested in starting a support group for autistic families here in Cherokee and is willing to take the lead. Anyone interested can contact her at 225-2629.
Autistic children face many social challenges. Most of the challenges are due to the fact that the disorder causes emotions to be foreign to them. You won't find them handing out hugs and kisses at family functions. Brewer says sometimes that is difficult for family members to understand. Families have to learn that it has nothing to do with them, autistic children are just not able to display that type of emotion.
School provides another challenge for autistic children. Autistic children do not understand the social "unwritten rules" and verbal and nonverbal behavior clues are foreign to them as well. Brewer says she has explain literally everything to her son. Things most people would automatically understand have to be explained in detail because autistic children are very literal thinkers. Rules for them are black and white with no gray areas. Following the rules to the letter are not always a bad thing. For example, her son knows it is wrong to lie and as a result he is unable to tell a lie.
The literal thinking of autistic children make change for them very difficult that is why a regular routine is a must, even for a higher functioning autistic child. Brewer's son does quite well in the academic areas of math, science, social studies and most of the time spelling because those things don't change.
Part of understanding autism is educating others about the disorder. Brewer got together with the Autism Team from the Area Education Agency in Sioux City earlier this semester and provided a presentation about autism to her son's fourth grade classmates. They felt it would benefit both her son and his classmates. Since he doesn't understand his own feelings, he can't fathom understanding the feelings of others, which had presented some social conflicts at school.
After the presentation, Brewer, who is a one-on-one, teacher's aide for another autistic student at Roosevelt Elementary has noticed an improvement. His classmates are much more understanding. She sometimes would see her son standing on the play ground wanting to play but not knowing how to join in. Now his classmates ask him to join in a game and take the time to explain the rules of the game they are playing. She has also notice fewer conflicts with other students.
For both the Harrison's and Brewer's there have been many emotions associated with finding out their child has autism. They have gone through all the emotions of trying to figure out what they may have done wrong, even though they know it had nothing to do with them. They have educated themselves on the several possibilities for the cause of the disorder, but in the end, no one knows why.
If you can imagine knowing that somewhere inside your child's brain their little personality is hiding in the background. Once in a while you might think you've caught a glimpse of it and you wonder, "Is that what my child would have been like?" If the Brewer's and Harrison's dwell on that, their sense of loss would be overwhelming, instead they find the good in their children and do everything they can for them.