Building a Support System for your ASD Child

In the weeks since R's diagnosis, it's been appointments and assessments here and there.

It's also time for my husband and I to process what's happening.  I can't speak for him, but this time was beneficial for me as I got around accepting the diagnosis as it was.  Reading the books I've recently reviewed also really helped me in coming to terms with it.

Did I go through denial?  Yes.  Did I go through grieving?  Yes, absolutely.  A diagnosis like this is completely devastating for a parent of a child with ASD.  You had all these dreams and aspirations and plans for what you wanted to do and wanted for this child since the day of his/her birth, all the things you wanted to experience with him/her.

A diagnosis like this shatters that.

It's okay to process the grief.  That was why I said that reading all those books really helped.  I've since learned that a diagnosis of ASD is devastating, yes, but as I've read many times, it is not a death sentence.  Depending on where on the spectrum a child with ASD is, a parent's job is to advocate for the needed support services for said child.

That said, I will go on writing this article under the assumption that you are located in the Philippines, are a parent of a child that was diagnosed with ASD, and that you're looking for information on your next steps.

So in the context of the Philippines, what support services are available for children on the spectrum?

First and foremost, the one thing you must, and I mean must, save as a reference is the report you get from the developmental pediatrician.  This document is needed to be able to avail of almost all the other services I will be mentioning later.  Do not lose this document.  If your developmental pediatrician did not give you a report, ASK FOR IT.

Second, apply for a Person With Disabilities (PWD) ID for your child.  This ID gives your child, and you as the child's caregiver, several benefits like 20% discounts in restaurants, 5% off on basic commodities and medicines, as well as priority parking.  In some areas you get free parking or free movie tickets.   There was also a benefit that caregivers who declare PWD child as their dependent on their tax forms can get PHP 25,000.00 annual tax deduction, though there is currently a bill being proposed to repeal this.  I suggest you get this as soon as possible.

The requirements for a PWD ID may differ depending on location, but at the very least is the following:

• PWD registration form
• 1 x 1 or 2 x 2 photos of child (check with your city or barangay hall as this could differ)
• Thumb mark or signature of the PWD
• Medical abstract from your child's attending doctor or a report from said child's school teacher or principal.  

You are to bring these documents to your nearest city or barangay hall's PWD Desk.  Availing of this ID is free.

Third, I don't think I can stress this often enough, start therapy.  Depending on your child's condition, find a reputable center that can assess your child and give him/her the custom program that s/he needs.  This is where it can get confusing.  You will be bombarded with several suggestions, information and even misconceptions as you navigate your way around this.  

The first doctor we saw this year, the one who officially diagnosed R with ASD, recommended that we add Applied Behavior Analysis (ABA) to our roster of therapies.  (As you know, R has been undergoing OT and speech therapy for three years already.)  This doctor said that it's because ABA is evidence-based and recognized in many different countries as particularly beneficial to children on the spectrum.

When we went for a second opinion, however, we got the same diagnosis with a different recommendation.  The second doctor was not keen on ABA, not because she didn't believe ABA was helpful, but because of the system here.  The Philippine Regulatory Commission (PRC) is in charge of certifying professionals in the country, be it nurses, doctors, lawyers, teachers and such.  OT and speech therapy are 4-year degree courses offered in several universities in the Philippines, and once they graduate, they are required to take the PRC licensing exam before they are allowed to practice and take on clients as therapists.

Not so with ABA.  There is no university here offering ABA as a degree.  The PRC is currently not certifying ABA therapists.  As such, anyone can attend a seminar that lasts some weeks, and start calling themselves an ABA therapist.  According to the second doctor, the only certified ABA center in the Philippines is Applied Behavior Consultants Philippines, and because their services are rather expensive, most parents opt to remain with OT or engage the services of a person who claims to be an ABA therapist without the certification.

It's your decision as a parent to weigh what your child needs.  Don't be afraid to ask questions, and you don't even need to pay for several sessions at once.  You can pay for a few sessions and see if your child enjoys it.  Always check in and see if things are going well between your child and his/her therapist(s).

Fourth, if your child is in school, then be open about the diagnosis to your child's teachers.  Some schools call themselves inclusive, meaning that they accept children with special needs and integrate them into classrooms where they can interact with neurotypical children.  These schools also provide services for special needs children, such as shadow teachers.  Some of these schools also offer therapy services if you cannot find a center to accommodate for your child's condition.  Ask, ask, ASK!  Find out what you can and avail of these services if you feel they are beneficial for your child.

Fifth, consider genetic testing for you and your child.  The National Institute of Health at University of the Philippines Manila is offering a test that they call high-resolution chromosomal analysis.  This is a blood test to see if your child has any genetic mutations and check them against those known genetic markers that are said to cause some forms of autism.  They will test your child first and it will take 28 working days before a result is out.  If they don't find anything, then it stops there.  If they do, they'll test you and your spouse/co-parent/partner to see if your child inherited it from either of you.  If so, your next child will have an 80% chance of also being on the spectrum.  You will need a letter from your developmental pediatrician to avail of this.  The test costs PHP 5,500.00 per person's blood draw and is non-refundable as there have been instances that the chromosome did not grow in those 28 or so days.  It is an option you can look into if you want to find out about your genetic history.

So what is our game plan right now?  Well, for starters, we will press on with OT and speech therapies, for sure.  We're trying out an ABA therapist right now, from a center that seems to have a good reputation.  I will not name said center right now as I am still looking into them and giving them time to see if they live up to their claims.  And if I'm satisfied and feel they can be recommended, you can be sure I will mention it here.  My sister has also introduced me to a friend of hers who is a certified ABA therapist in the United Kingdom, so I can touch base with her if I have any concerns.  We're also discussing adding more OT sessions, and looking into schools that will be good for R by next school year.

But that's for us.  It could be different for you.  That's why it's really important that you also take care of yourself.  I find that for me, praying to God and asking for wisdom is instrumental in helping us make the decisions we're making.  Having a support group of friends, church and family is also really beneficial for us.

I've always believed that being open about a problem is a crucial part in taking the necessary steps to resolving it.  Acceptance and the choice to tackle this problem head on, rather than sweeping it under the rug and pretending it's not there, is usually the pivotal moment when things start to go into motion.  

I pray that the Lord Jesus Christ will grant you wisdom and discernment as you go through this journey with your child.  I also hope the services I mentioned above will be of big help to you.