What is Autism? Autism refers to a complex neurological and developmental spectrum disorder that inhibits a person’s ability to communicate and develop social relationships.
Autism prevalence rose 57 percent in the last five years according to the U.S. Centers for Disease Control Prevention as of 2006 report. 1 in every 91 American children is diagnosed with autism, as stated in the 2009 CDC report to the U.S. Congress.
The incidence of autism is on the rise, not only in the CNMI, but around the world. Not only are the numbers increasing, but diagnosis is recognized more at an earlier age and in a milder form.
The demands of living with a person with autism are great, and families frequently experience high level of stress. Recognizing and preparing for the challenges that are in store will make a tremendous difference to all family members involved, including parents, siblings, grandparents, extended families, and friends.
The uniqueness of each individual with autism makes the experience of living with autism different for each family. But there are some consistent themes or issues that most families will want to be aware of to be able to provide the best support to the individual and to family members.
As a parent and secondary consumer, I would like to share my family experience. My son, Nicholas, has been diagnosed with autism, pervasive developmental disorder. After Nicholas was diagnosed with autism, my wife, Vivian, and I have had to make tremendous changes in our everyday lives. The same thing was done with our daughter as well. We struggle each day; and it is more of a blessing instead of suffering.
Throughout the years we have educated ourselves through massive readings, online research, attend trainings and conferences and outside perspectives from parents on-island and abroad.
Nicholas continues to progress through his special education program at PSS, as listed in his individual education plan. Adjustments were made for his accommodations, which includes his inclusive program. He has gone through tremendous trials and errors, even to this day in high school.
Least to say, he is blessed to have such a wonderful and hardworking team of teachers, school administration, and most especially his teacher aide.
My wife’s daily drop-off to school and pick-up after school (including his lunch prepared at home) are always prompt.
Nicholas thinks with pictures in his head and echolalia to verbal commands either at home or at school. He will talk to us only when he wants or to do something or help needed. Although with his autistic condition his comprehension is good.
He is meticulously neat and everything had to be in order. In fact, nothing pleased him more than taking his toys (cars, trains and airplanes) and lining them up in a straight row that would have made a drill sergeant proud. When I would move a toy in the middle of the lineup just a quarter inch off, he would zoom in on it and immediately put it back in its proper place.
He is also very routine-oriented. For example, when we handed him a cookie or chip for a snack, he would first put it on the table and then pick it up and only then would he eat it.
Also, if we went to visit friends or family members, we always had to take the same familiar route. If there was traffic and we had to turn down a different routine he would throw a tantrum (irritated). Now we were able to convince him that taking a different route gives him the opportunity to see something new and different.
My wife is very understanding and tolerant, since I am the breadwinner of my family. In our home, we have what we call “shift changes.” Each day after work is my time to work with Nicholas. My wife then takes a time-out or what we call in-house respite-care. I am his “buddy” at home. We have a routine check around the yard for cleanup, followed with our usual two-mile walk around the village three times a week. Nicholas’ expectation or reward is the usual stopover at the Ming Yang store for a cold soda and chips.
Every Saturday is our routine schedule at Joeten-Kiyu library for about an hour or two. It’s followed by a drive to the Post Office and independently check the mail box. Then off to Koblerville Shell Service Station for an ice cream. We’re teaching Nicholas the independence of purchasing and value of money. The service station staffers know Nicholas well and treat him with respect. It’s the same situation when we visit Ace Hardware, Joeten Shopping Center or at times when we’re having meals at McDonald’s. At times when we’re at public place when we bumped into some students from Saipan Southern High School they will greet him and give each other hands high-five of pump-fist.
On every other weekend for his enjoyment and relaxation we have a joy ride around the airport vicinity watching with excitement airplanes approaching, landing and taking off and sightseeing at Marpi area where we also do walking through its pathway.
Children with autism such as Nicholas have difficulties with social interaction, communication, and activities and interests. Individual with autism will not necessarily have all of the signs and symptoms associated with the disorder. Although they may exhibit similar symptoms, no two children with autism are alike. An autistic child can lead a near-normal life. Their cognition is deep but they cannot express their feelings.
We preach daily to Nicholas that our daughter Nakita is his older sister. The importance of establishing a positive sibling relationships among children not only makes day-to-day living more pleasant, but also creates a life-long support system for the siblings involved. A relationship of love and support can be more difficult to establish and more crucial in a family where one of the siblings copes daily with a developmental disorder.
Siblings of children with autism face challenges, and may find it difficult to understand the nature why his or her brother exhibits certain behaviors, such as aggression and self-stimulation which may even be scarier when observed at eye-level. Often our daughter falls into a role of support for her mother and experience her grief.
It is difficult for any parents to find the fine line between helping their child in an immediate situation, and allowing the child to learn independence by struggling with a daily living skill.
Children with autism who are allowed to work independently rather than taught to rely on parental assistance are better able to function in the home and in other community settings. The earlier independence is demanded for a child, the easier it will be for him/her to learn the necessary skills for daily self-care and management.
Autistic children need to be given the opportunity to struggle with tasks such as self-dressing, hand-washing, routine cleaning, self-feeding, and even having to stay alone at bedtime and falling asleep. This does not mean that parents are precluded from caring and from helping their children to learn to adjust to independence and to correctly perform these tasks.
Parents of children with autism and/or other developmental disabilities are in the habit of taking extra care with their children. It is important to remember that all children, including those with autism, can benefit from guided trial and error. Make time for your child to learn to dress himself before leaving the house. Allow for mess at the kitchen when the child learns to eat with a spoon and fork. Be prepared for falls and scraped knees when he is running or struggles trying to climb stairs. Also, keep certain guidelines in mind when trying to lead your child toward independent living and independent accomplishments in the home.
Without the patience, my wife’s enormous understanding, and my daughter’s sixth sense ability, I don’t know how we could overcome our battles.
FRANCISCO D. CABRERA
San Vicente, Saipan
