RENDEZVOUS OF GIFT AND IGNOMINY: FILIPINO PARENTS'

PERCEPTION OF AUTISTIC CHILDREN'S PERSONA

" Munti mang tuldok mahalagang sangkap na bumubuo sa isang pangungusap".

-Anonymous

-Romeo Rivera Jr.

Data analysis occurs simultaneously with data collection.

Data collection continued until the data are saturated (Thomas, 1990). Sampling

was terminated when no new information came forth from newly sampled units. The

researcher has finally stops data collection when saturation of the data occurred.

Text analysis was applied to the data gathered. The process involves four

steps which are identified as follows: 1.) Discovering themes and sub themes, 2.)

Winnowing themes to manageable few, 3.) Building hierarchy of themes or code

books and lastly, 4.)Linking themes into theoretical model.

Collaizi's procedure was also utilized during data analysis that includes

process of; 1.) Reading and re-reading of the interview transcription, 2.) Extraction

of the significant statements, 3.) Formulation of meaning, 4.) Categorizing

formulated meanings into themes,5.) Integration of the findings into an exhaustive

description, 6.) validation of the findings and, 7.) incorporating any changes of the

subjects of investigation (Collaizi, 1978 cited in De Guzman, 2009).

Manual analysis of data was employed to preserve the "Look and Feel" of

qualitative research (Sandelowski, 1995a).

Parents' responses yielded perceptions of autistic children's persona in a Persona

Opposition Continuum. This continuum consists of opposing wave patterns of four levels

of negative perceptions at one end and four levels of positive perceptions at the other end.

The parents' negative perceptions of autistic children's Persona range from Disturbing,

Discomforting, Distressing, and Depressing on one end; to positive perceptions of

Encouraging, Strengthening, Inspiring, and Enlightening at the opposite end. The

illustrated opposing four fold wave pattern level summarizes the Parental Perception of

Persona Opposition as seen in figure 1.

On the first level of the downward wave curve, Disturbing Persona was first

described by the respondents. Disturbing Persona is a behavior or personality that are

usually identified by parents even before diagnosis. Parents worry and their attention

were caught by Self-stimulating Behavior of their children. As one respondent verbalizes,

"My son manifested hand flapping and fidgeting especially when he wants something".

Disturbing Persona is usually identifiable by parents and caregivers and may or may not

be noticed by other people. Other respondents accounted that, "My son lost skills such as

ABC's recitation and number counting by the age of three." These instances of

Developmental Cognitive Skill Regression usually worries and bother parents that lead to

a more keen observation until they are prompt to ask friends, search in internet and
consult pediatrician. One of the most common Disturbing Persona is Communication

Skills Developmental Delay. One respondent shared, "My son can't talk yet so

communication is non-verbal., actually it is the main reason that prompted us to consult

the developmental pediatrician".

Behaviors of children with autism that became increasingly worrisome and

parents who become physically and mentally uneasy are identified as Discomforting

Persona. Parents identified some persona such as Poor Frustration Tolerance and

Communication Skills Developmental Delay. Parental accounts are as follows:

"He really throws tantrums and cries in the malls or places with many people".

"When things don't get in his way, he would cry and disarrange toys and throws

things in the house".

"He only shouts, makes noises for hours, grabs and pushes you to the object when

he wants something".

These comments are identified as Discomforting Persona which is inconvenient

to parents because of physical and mental effect to them. This behavior is not limited to

the observation of parents because it draws attention of other people.

Distressing Persona occupies the third level of the downward wave curve of the

negatively perceived characteristics of children. Parents experience considerable mental

or physical discomfort and hardship because of the child behavior. Self Care

Incompetence's of some autistic children takes toll to parents day to day living. "My son

doesn't go to comfort room to defecate; he would defecate wherever he feels the urge to
do so". Other instance that Distressing Persona is experienced by one respondent is

when they went to a birthday party and his son has cried all throughout the time, he stated

that he didn't enjoy the party at all instead they are more stressed. He shared that Sensory

Stimulus Hypersensitivity of the child make it impossible for them to enjoy party. Poor

Safety and Danger Protection is another concern of parent respondents as the two

respondents recalled, "My child usually climbs at the TV and table without regards to his

own safety". "He is very vulnerable to get lost in malls and in places that is crowded

because he doesn't know which way to go and he doesn't care who is with him".

Lastly, the parents become dishearten of child's behavior that they become

powerless and believe that the child is a hopeless case, these words define Depressing

Persona. Three of respondents accounted "It really takes time before he learns something

before he acquires simple skills". This account of Learning Inabilities and Difficulties of

the child are usually assessed in cases where they are with a normal kid and they feel

depress of comparing the cognitive skills of their children. Depressing Persona is not

limited to low level cognitive abilities of the child but it also extends to eating pattern as

one of the respondents shared, "My child has taken only water and soup for three weeks

without even taking any solid food'. Another said "When is younger he would eat it

anything except for guava. When he doesn't like the food he would usually throw up/

vomit so you can't force food on him that he doesn't like. Before, he even eat stuff such as

corned beef, egg, pasta but now it would take a month before he eats again solid foods.

His diet is more of milk formula and he only eats fried chicken in a particular fast food
but would never eat home made fried chicken or even fried chicken from other

restaurant. When he eats spaghetti he would choose the sausages but not the pasta if we

are eating in the restaurant but would eat all the pasta if it was cooked by his mother.

For days he would eat one particular food and on the other day would eat no more so

you need to find out what menu would suit his taste again. If he is hungry he would first

taste the food and would eat if he likes. Sometimes he would get the milk bottle to drink

his water or milk but the most peculiar of him is that he now drinks his milk in a 30 cc

syringe not in the bottle". This account of Eating Pattern Peculiarities of children with

autism is frustrating to the parents who are especially concern with the health of their

children.

The opposite high end curve identified four level of positive parental perception

of children behavior. Respondents have positively perceived some of negative behavior

or characteristics of children. Adaptation is made possible by love and commitment

given by parents to their autistic children.

The first level focuses on Encouraging Persona. The first level defines the

perception that parental hope and confidence raises when children show improvement

and good attitude from the child. Accounts of this behavior are as follows:

"Though very little, he showed improvement on therapy especially the attention

span and impulsiveness."

"He is interested in alphabet and numbers"

"He loves Literature, number and puzzles."

 "He knows to put on shoes and independently eats using spoon".

A task maybe too simple for normal children but mean a great success for

autistics and this also mean the same to their parents who celebrate modest victories

attained by the child.

Other parents reflected their child's negative characteristics into a positive one. As

they have shared, "He is very vulnerable and dependent to us so we need to be always on

his side to guide them". Although parents are overwhelmed by fear and grief for the loss

of the future they had hoped for their child these strong emotions also motivate them to

help and guide their children. Strengthening Persona is negative and positive persona

that both arouses and increase parent's mental and emotional capacity because of their

wish to guide their children until they become independent and productive.

Positive portrayal of affection and high level cognitive skills inspire parents to

give the best shot for their children. Inspiring Persona of the child acts as impulse that

drives parents to be more enthusiastic in their day to day child rearing, caring and

bonding activity. High level cognitive skills of some autistic children help parents cope

up with the stress of simple communication skills deviation such as echolalia. During

interview of one respondent, a hint of proud feelings was noted when intelligence was

tackled. Interestingly a parent of a highly functioning autistic manifests a much better

self-worth than parents of low functioning autistics. Parents of these children are more
inspired to nourish and help the child achieve their best potential. Accounts of positive

portrayal of affection are the following:

"He is a pure-hearted individual and that inspire us to become better parents"

"He loves to kiss and hug us".

"When he sees other kids that is crying he would comfort them and urge them to

stop."

"He is kind, loves to share with his toys and very affectionate to us".

Because of the atypical nature of the autistic child, a simple kiss and hug brings

great joy to parents. The purity of intention when showing affection that the parents feel

greatly uplifts their worth as a person.

Enlightening Persona is defined as perceived persona of the child that enables

the parents to mentally and emotionally understand and view the significance of all things

in a much clearer and better perspective. Two verbalization of enlightening persona were

captured in the interview of two parents. One respondent shared, "His disabilities help us

realized the importance of every person and the uniqueness of individual" and the other

states, "He opened our eyes to appreciate every little things that the God had have given

us". This stories signifies that parents learned to be more patient and to connect to their

child whenever and however they can personally and they are able to cope up

emotionally and spiritually.