The Autism Society Philippines (ASP) is a national, non-profit organization dedicated to the well-being of persons with autism spectrum disorder. The ASP has been in the forefront of providing services and training to families living with autism.

26 May 2010

Let’s now listen to the neglected family member

By: Dang U. Koe, ASP Chair Emeritus


In her broad experience as special education teacher and former school director of Center for Autism and Related Disorders (CARD), Rosalyn Marie G. Sorongon strongly recognizes the vital role of family involvement in the education and development of persons with autism (PWA).

A lot has been said about autism and its effects on the parents of PWA. “(But) a family is also composed of other children, the siblings,“ emphasized Teacher My (as Sorongon is more popularly known).

In completing her masteral thesis in Special Education at the University of the Philippines (Diliman), Teacher My interviewed siblings of PWA to find out the possible effects of autism on these siblings; their experiences and how they cope as siblings of PWAs and their concerns in relation to their brothers or sisters with autism.

Teacher My advises: “Paying attention and listening to the siblings reinforce the message that they are seen as equally important as their brothers or sisters with autism.”

As trainer of Autism Society Philippines, Teacher My continues to listen to the siblings of PWA by conducting siblings workshops in ASP’s different chapters.

Here Teacher My gives a glimpse on the various experiences of these siblings and their coping mechanisms. The siblings’ responses were grouped according to age groups. For confidentiality, specific names are not given.


Sibling of Children with Autism

• AGES 8 - 12 YEARS OLD

1. When a child with autism (CWA) breaks their siblings’ things or disrupts their study/quiet time, most siblings get irritated or angry. They cope by shouting or crying out of frustration but without telling the adults; others spank or scold the CWA

2. When parents give more time and attention to CWA, most siblings get jealous. They cope with this either by keeping quiet, sulking inside their rooms, “nagdadabog,” wishing the CWA will disappear, or questioning their parents on definition of “special”.

3. When the CWA hurts oneself, sibling or other family members, siblings either get scared or sad. Others run away for their safety, seek adults’ help or refuse to interact with the CWA. Some apply learned intervention, like massaging CWA with lotion for calming.

4. When CWA can’t understand what siblings want or say, or when the CWA prefers to do things alone, the 8-12 year-old siblings get confused, frustrated, helpless, bored or feel rejected. Others cope by asking help from adults what to do, while others just prefer to interact with other typical children.

5. When CWA disrupts family time due to challenging behaviors, the young siblings are either concerned, irritated or embarrassed in public. Most of them leave addressing the challenging behaviors to the adults.


• AGES 13 - 19 YEARS OLD

1. Most of the adolescent siblings feel deprived of time for oneself when they are asked to care for, teach or join activity of CWA. Some of them are “nagdadabog” or get upset but still follow parents. Others admitted hurting their CWA, while others pass their responsibility to other siblings.

2. When these siblings are disrupted during study/quiet time or their things are destroyed by their CWA, they also get irritated or distracted. Most of them cope by just prohibiting the CWA to enter their rooms or touch their things.

3. Just like the younger siblings, the adolescents get frustrated with the CWA’s communication difficulty and would just prefer to be with peers.

4. Their CWAs’ challenging behaviors irritate or make the teenaged siblings concerned. Some of them do behavior management strategies, others just give in to the CWA’s demand, while others threaten the CWA.


AGES 20 YEARS OLD – ABOVE

1. The adult siblings are concerned about lackthe CWA being independent and issues of survival and sexuality. Some of them constantly worry and volunteer to teach the skills needed by their special siblings.

2. When family relationships are affected (like parents separating) because of autism in the family, the siblings are of course hurt; but most of them keep quiet or try to accept the situation.

3. Adult siblings become protective when their CWAs are subjected to public ridicule. Sometimes some of them get into fights with rude people.

4. For communication difficulties of their CWA, some siblings feel helpless, while others try other strategies. Others become more understanding of the CWA.

5. These adults fear or are scared they might be carrying autism genes. But they could only worry, not knowing what to do.

6. Some of these siblings are pressured when they feel obligated to carry the responsibility over the CWA when their parents are old or gone already. Some of them cope by opening up their feelings to their parents; others are pressured to look for high-paying jobs.


THINK OUT OF THE BOX

Even though there may be patterns in how they respond, react and cope in a given situation, siblings are still unique individuals belonging to a family that is also composed of unique personalities.

Each sibling of a person with autism has a story to share given that his/her family has its’ own dynamics, living condition, traditions, attitudes and priorities intertwined with the sibling’s own set of value beliefs, opinions, feelings and situation.

They experience what other siblings of families who do not have members with autism go through. They crave for parental attention and time; they have feelings of being responsible and showing concern to siblings in need, of irritation and anger, or issues on sibling rivalry. Their situation only becomes highly emphasized because of autism.

To think out of the box is the challenge posted not only to the siblings but as well as to the parents, professionals and other people who manage to give care and attention to persons with autism.


PARENTS, IT’S TIME!. For the parents, you may not be used to seriously discussing autism within the family, its challenges and strategies in dealing and/or coping with this condition. Then let’s think out of the box. Probably it’s time to sit down and talk about autism with your family.


You think that you do not want to disturb your other children by discussing the future of their sibling with autism. Think out of the box. The other children might be dying to know your plans and they want to be part of the process of planning for the future of their brother or sister with autism.

On the extreme side, you often nag your other children to care for their brother or sister with autism. Think out of the box. Your other children need to have their own lives too.


SIBLINGS, EXPRESS YOURSELVES!

For the siblings, you consider it normal not to express to your parents your feelings of irritation, anger, frustration, fear, anxiety – which are all normal feelings – for FEAR you might hurt their feelings. Think out of the box. You tell them exactly how you feel for a good release and they might be able to even help you given the years they have been dealing with the roller coaster of emotions brought about by autism.

You want other people to hear and listen to your needs or concerns. Think out of the box. Speak up just like the few siblings who have been very courageous in sharing their life stories through video interviews and publishing their written works in leading newspapers and ASP’s newsletters.

Probably we, professionals, have a gamut of ideas on how to extend help to the siblings of persons with autism; yet it seems like some of our efforts are not enough. Think out of the box! Probably we need to ask them for suggestions. They might even have better ideas than us. Better yet we need to know first if they truly need our help and if ever, in what areas.

So when we go home and see our other children or our parents or when we go to work and see the siblings of our students with autism, let us THINK OUT OF THE BOX and hopefully next time, the siblings will get to share another side of their story.


ASP conducts back-to-back seminars on May 29: “Inclusion of Children with Autism in the Regular Classroom” with Dr Mercedes Adorio from 9am to 12noon; and “Friends, Puppets, Shades and Games (Fostering Social Inclusion and Mutual Friendship between Children with ASP and their Peers, Siblings, and Classmates)” with Occupational Therapist Anthony Grecia.


Venue is Quality Life Discovery, #70 20th Avenue, Murphy, Quezon City. For details, visit www.autismsocietyph.org or email autismphils@gmail.com.



Source: Manila Bulletin, May 23, 2010

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