As a mother of a 15-year old boy with autism who still needs full-time supervision with his daily routines, I was distraught reading an article about “Growing Old with Autism.”

The article was written for Time Magazine in May 25, 2009 by Karl Taro Greenfeld, brother of Noah – with autism.

Excerpts below:

“Despite the successful marketing of the affliction by activists and interest groups, autism is not a childhood condition. It is non-degenerative and non-terminal: the boys and girls grow up. For all the interventions and therapies and the restrictive diets and innovative treatments, the majority of very low-functioning autistics like Noah will require intensive support throughout their lives. If recent estimates of prevalence by the Centers for Disease Control and Prevention are accurate, then 1 in 150 of today’s children is autistic. That means we are in for a vast number of adult autistics — most better adjusted than Noah, some as bad off — who will be a burden to parents, siblings and, eventually, society.

We are largely unprepared to deal with this crisis. Autism funding and research, so far, have predominantly focused on children. It remains difficult for families of adult autistics to find the programs they need, to access those services that are available and even to locate medical
professionals and dentists who can handle adult autistics. Too much of the burden rests on the families themselves, who remain in the picture as caregivers, advocates and, too often, the only party with the autistic adult’s best interests in mind.’’

When confronted with such dire forecasts, I turn for inspiration to other parents who take matters into their own hands. Parents like those of ASP Laguna Chapter who make things happen for their children, despite limited resources in our country.

Our Angel Talker this week is the “perpetual president” of ASP Laguna Chapter – Rizalinda Cansanay, having served as such since 1997. A certified public accountant, her career path took a different direction when her son Michael, now 24, was diagnosed with autism. She became a special education teacher and eventually a principal/manager of Autism Center of CAHBRIBA (Los Baños). She is currently an educational consultant for various SpEd schools/centers in CALABARZON towns. Most of all, she is ASP’s “promdi” (from the province) president who spearheads community-based programs for PWAs – promdis with autism.

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Whenever I make a trip to Manila, I would not miss signs that say “On this site will rise... a condominium... a new residential community…. or a new establishment”. These often left me wondering, dreaming. How about a sign that reads “Soon to rise on this site: an enabling community for young adults with autism?”

In the more than 15 years of working with families and their children with autism, I have often witnessed these individuals retreat back to their own worlds. Sadly, after years of special schooling, they end up back at home, idle, and useless.

WHAT’S LIFE AFTER SCHOOL?

After school, opportunities ought to be available to individuals with autism. In an enabling community where people with autism are informed, concerned and involved. Opportunities to live (self care and home management), to play (socialization and recreation) and to work (being productive) - after all, the long stage of adulthood involves all these three. The enabling community will empower
them to enjoy life in the society as typical individuals do.

In February 2004, on the grounds of University of the Philippines, Los Baños, Laguna, under that huge acacia tree beside the Carillon tower, this vision came to us through divine inspiration.

We dreamt big. Our goals were big goals.

1. Create jobs for our adults with autism.
2. Provide living and recreational facilities.
3. Make the physical environment more adaptable for participation.
4. Educate the people in the community about autism.

We talked about how to begin work towards that vision. But ended up with asking ourselves the big question - HOHOW? To begin with, we badly needed a place to establish our base.

A month later, on March 27, we presented the vision to a group of parents. But nothing came up. Though frustrated, we were not discouraged. Our faith in God has taught us to dream BIG, so we continued to keep that dream, we worked hard and persevered in our prayers.

One day, Marivic, our chapter secretary suggested getting in touch with my brother-in-law Remy. He agreed to lease his 288 square meter lot in Los Baños to our chapter with the obligation of just paying less than R2,000 for the annual real property tax.

Confirming that God heard our persistent cries for help, we ventured on our first major fund raising project. “A” Festival of Arts on January 7, 2005 for building the Autism Resource Center, Laguna. This structure was to house two experimental families with children with autism. Family A: with one dual parent household and Family B: with one single parent household.

Soon, we had a cemented pavement and one residential unit. Several guests visited, posing for pictures with the unfinished “ARC” logo on the background. We held activities at the ARC for parents, siblings and children.

To augment our funds for ARC, we initiated a social enterprise such as simple food service for the seminars which our chapter organized, retailing VCOCO (virgin coconut oil) products such as bottled oil and facial soaps, growing vegetables (pechay) through hydroponics technology - all these projects involving the PWA adults.

THINGS FALL INTO PLACE

In November 2007, ASP Laguna Chapter became one of the beneficiaries of the 2nd Angel’s Cup Golf Tournament held at Camp Aguinaldo. Through the support of General Angelo Sunglao and Colonel Regino Catiis and sponsored by PNP Maritime Group, the funds paved the way for the ARC to be completed. ARC Laguna was finally inaugurated on January 20, 2008, coinciding with the Autism Consciousness Week. Now we have a real center at last!

We held regular office three days a week, seminars for small groups and parents support group meetings. The simple food service and VCOCO retail continued, but we wanted the enterprise to become bigger so that there would be more jobs for the young adults.

I kept telling my son with autism, Michael, now 24, to always pray that God will take care of the ARC so that he can have a job for life. Our group went back not to the drawing boards, but to the praying boards and asked God for miracles.

In October 2008, the project “A Social Enterprise in Batong Malake for Young Adults with Autism and their Families” was given financial assistance by PCSO (Philippine Charity Sweepstakes). It was the miracle we prayed for! The funds enabled the chapter to jumpstart its enterprises which included arts and crafts, photocopying, binding and laminating, and conduct skills training on meat processing.
Soon, a formal cooperative registered with the CDA (Cooperative Development Authority) will emerge as part of the project. ASP Laguna Chapter continued to hope because God keeps His promise to those who keep their purpose firm. We held on together, keeping our dreams alive.

On May 5, 2009, our executive director Ranil Sorongon almost collapsed twice at the office
after receiving the news that United Parcel Service (UPS) approved a grant of $40,000. This grant for a sustainable work-live-play training program for young adults with autism was proposed by ASP National to the UPS Foundation.

On the first day of June, the project started officially with a ceremonial turnover at the ARC. Everyone was emotional to the point of tears.

Aside from training these young adults, the project will also give the necessary financial support to enable the chapter to network with families, member schools in Laguna, local government
units and community groups so that enabling mechanisms can be established.

These mechanisms are in the form of environmental adaptations, volunteer networks, educated populace, and in place programs. All of these are directed at enabling young adults with autism to experience meaningful participation in the community of Barangay Batong Malake, Los Banos, with their families.

On June 16, 2009, the first batch of trainees started their training program. This group was assessed on selected tasks, process and motor skills by the interns of UP-CAMP (University of the Philippines College of Medical Professions) last April 25, 2009. More trainees will be accepted to undergo appropriate modules that will incorporate live, play and work.

Our center is located at Santa Fe Subdivision. “Fe” is the Spanish word for FAITH. A leap of faith, that’s how we see all these things happening.

The events that came one after another since 2004 have proven that the enabling community is truly a divine inspiration - an answer to the purpose driven vision.

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Catch Charles Slye on “Using Music and Visuals in Teaching Academic Subjects and Life Skills to Children with Autism” on July 4-5 in Baguio City, July 11-12 in Cebu City, and on July 18 in Clark, Pampanga. For details, email autismphil@pldtdsl.net or autismphils@gmail.com or log on to http://autismsocietyphilippines.blogspot.com.

Dang U. Koe is the national president of Autism Society Philippines (a not-for-profit family support organization with 37 chapters nationwide, and almost 6,000 family and professional members who are working together to create an environment that helps persons with autism spectrum disorder to become, to the best of their potentials, self-reliant, independent, productive and socially accepted members of society. She is a sought-after seminar and conference speaker on autism. Her 15-year old son Gio, diagnosed with autism, propels her to be a passionate autism advocate.