Understanding a sibling with autism

By DANG UY-KOE, ASP Chair Emeritus

A passionate lawyer and autism advocate Emmeline “Em” Aglipay exemplifies the best Filipino youth --- idealistic, driven, and committed.

At 28, she started sitting in Congress as representative of the DIWA Partylist, working to ensure labor rights are properly accorded even to the smallest Filipino worker. Now at 30, she is one of the youngest recipients of the 2012 The Outstanding Young Men (TOYM) of the Philippines.

To us, families living with autism, Em is the younger sister of Mariel who has autism. Angel talker Anthea Pena, sister of Muneer, with autism, recently interviewed Em and discovered how much strength and inspiration she gets from her sister Maying.

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When did you realize that your sister was "different," and how did you feel about it at that time?

When I was young, I remember my parents talking about Mariel during dinner and the "time-out room" was mentioned. They explained that in Mariel's school she would be placed in the time-out room when she was throwing tantrums or whenever she does not want to communicate with words. My parents told me that Mariel was special and had to go to a special school. That's when it registered to me that Mariel was different.

My parents would always tell us that Mariel was an angel and we should take care of her and understand her. They would show us by example how to be patient with her whom we fondly call Maying. It was difficult to be patient with her all the time, especially when she would throw violent tantrums or throw fits in public. But my parents were always patient with Maying and even to other people who couldn't understand her condition. Their dedication and selflessness inspired me. So when we were growing up, and coping with Maying's autism, I felt my entire family’s love for her.

Can you share a particular experience that made you closer to your sister?

Maying has difficulty expressing her thoughts and feelings through words but she listens and feels better than most people do. She has a way of comforting me, like no other person can, without saying anything at all. During the most trying times of my life and the most difficult heartaches, I would sit beside her and lay my head on her lap. Sometimes, I would cry. She would not say anything but I could feel that she felt my pain. She would comfort me with her touch, her warm hug, and her innocent and loving eyes. I would always feel better after, like the feeling you have when you pray intently and in silence. You know in your heart that God is watching over you and that everything will be okay. I would ask her to pray for me and I know that she does.

What about an experience that challenged your relationship? How did you handle it?

When Maying was still adjusting to the Manila heat after being used to the cold weather in the East Coast, she would throw violent tantrums. She was only 10 then, and I was 8. I got scared of her because I would sometimes get hurt when she'd have her tantrums. I started not only to fear her but resent her for physically hurting me. My mom would talk to me a lot about understanding Maying and about the meaning of sacrificing when you love someone.

I love Maying so much so I learned what it meant to really love someone at a very young age. It meant sacrificing, bearing the pain, understanding, and helping that person become better and overcome her difficulties. Sometimes, it had to be a tough kind of love too. You have to let her know when she does something wrong and explain to her how the things that she does hurt you. But I know that she loves me too and if she can help it, she won't hurt me. I guess this experience made me stronger and more mature compared to most girls my age.

What will the future be like for your sister, and what role will you play in it? What do you wish for her?

Maying will be well integrated in society and she will be making her contribution in simple ways. I will always take good care of her, find ways to challenge her, make her grow and be fully integrated in society. I pray that she would be able to communicate her thoughts and feelings more effectively. I also wish that her allergies would be cured since it really bothers her.

What advice can you give young people who may be feeling pressures and resentment towards their special sibling? What advice can you also give parents?

My advice to them is to try putting themselves in the shoes of their siblings. Imagine what it would be like to have so many thoughts and feel a range of emotions that you cannot express fully. Imagine the feeling of being ridiculed or left out, of not being understood and wanted. Certainly at one point in your life you have felt that. Now imagine your autistic sibling who has to go through that every day of his or her life. Your family is your autistic sibling’s sanctuary so make him/her feel secured and loved.

I don’t know how it feels like to be a parent of an autistic child but I think in order to help their child improve, they should study the disorder and join support groups so that they can learn from the experience of other parents with autistic children. I’m sure they will be inspired by the stories of other families. I’m certain that it will be very hard for the parents but they don’t have to go through this alone. There are many parents out there who are ready and willing to help them out.

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Thea, daughter of ASP’s national president Jan Peña, is on her way to becoming an occupational therapist. This is a career path she chose to help her brother Muneer and others like him in the autism spectrum.

Vicente Rubio, autism advocate from California and director of Pathfinder Mentoring will hld seminars on “Autism, Health and Well-Being,” and “Autism and Mentoring Life Skills through the Ages” on Feb. 23 at the Quality Life Discoveries in Quezon City. For details, follow Autism Society Philippines on Facebook, Twitter and blogspot.

This article appeared in print and online by Manila Bulletin on 11 February 2013