The Cost of Autism

I have sat through many conferences and seminars on autism. In one such event early this year, a woman was giving a testimony on how Auditory Integration Therapy (AIT) brought wonders to her son with autism.

She said, "it is a bit expensive, but I am willing to try anything, spend money on anything because if I don't, I will never know whether it is effective or not for my son. After all, if it means that he will get better, pera lang yan (it's just money)."

I sat there stunned but commiserating with her. I would do anything, give up anything, spend anything for Anton's recovery. Then as I was about to sign up for AIT, I stopped myself. I was not thinking clearly. I was swept by the tide of hope that this woman had brought to the room. I knew her personally from another place and I believed she was telling the truth. But I realized, "my son is 3, hers is 7. I will do AIT after I have exhausted (and failed in) all other traditional means."

I bought an autism journal, "A Day at a Time" from Fully Booked. In it I listed recent therapies and supplements Anton has used. I also used the journal help with toilet-training.



By listing down what it was we were currently doing, I was able to see where we were still lacking. I had speech therapy twice a week so I decided to increase frequency to three times a week. I felt that better communication skills would help Anton in other problem areas as well.

Upon the dev. ped.'s recommendation, he now has SPED (Special Education) tutorials once a week. This was important, she said, to ensure that Anton is coping and absorbing concepts taught in his regular preschool.

We continued occupational therapy (OT) sessions twice a week, focusing on behavior modification and sensory integration. I also actively scheduled trips to new places like restaurants and malls in order to desensitize him to new environments. As for me, I began recipe-testing of Gluten-Free, Casein-Free (GFCF) dishes.

All in all, our schedule looked like this:




An ASD mom I recently met asked me in a (sort of) demeaning tone, "isn't that too much? Won't he be stressed?" I said to myself, "I have until age 6 to make a dent. When he's 7 he can slow down; but not now when it is most critical and most effective.

Just today, I watched Anton while waiting at the therapy center. He went to the SPED room at 12 noon, then after an hour stepped out and went into the OT room. After OT at 2pm, he went to the Speech Therapy room. I watched him "swing" from teacher to teacher, looking for signs of stress in his face. I knew he was tired (and maybe hungry) but right before his 2pm "speech" session, he was in the hallway saying "sunflower, sunflower" while smiling. I knew then that he would make it 'til the end. And he did.

My husband always scoffs when I say, "pera lang yan." At P 14,000 a month on therapies, it is not small change we are spending to help Anton get better. But one look at him now and we can see how all the time and money invested in Anton has paid off. We are in a good place and making steady progress.

During a visit to the dev. ped. last week the doctor said that kids with ASD who are diagnosed early have specific milestones that they have to meet by age 5. In panic, I asked, "so is that the deadline, 5 years old?" The doctor looked at me, smiling, and said, "what are you talking about? Anton has already met the 5 year old milestones... he will be okay."

My heart leaped and tears filled my eyes. No matter what my husband or anyone says, pera lang yan.


Watch out, world!

Moving On

We were diagnosed on a Friday. I was in Fully Booked buying ASD books on Saturday. By Monday, we found an Occupational Therapist (OT). Things seemed to be happenening quickly.

The doctor recommended the following: OT, Speech Therapy, SPED (Special Education) school. The OT was the easiest to find. It would be two months until we would find a speech therapist.

As for the SPED school, my husband and i both felt that it would be a dis-service to Anton to expose him to lower-functioning children. His language was emerging and he did not have the repetitive behaviors (spinning, flapping arms, rocking back and forth) that lower-functioning ASD children have. Our fear was that he would copy these behaviors and would actually regress instead of improve. (I have a story about this later.)

So, Anton continued to go to a Montessori school. The teachers were devastated at the diagnosis but knew that he would survive in a Montessori classroom. Even if he cried for the first two months of classes, eventually he settled in and got used to the routine.


Anton at work in Maria Montessori Children's School

Because of OT, there were big improvements in his behavior. The whining lessened and his behavior improved. The OT also worked on strengthening his gross and fine motor skills as well as improving his competence in Activities for Daily Living (ADL).

A week after our diagnosis, my adrenaline and hopes were up. We were starting our journey called "early intervention." But after trying for weeks to get a speech therapist, I was feeling helpless again.


Sometimes I feel like we're running around in circles with no definite direction. Then I stop myself because I'm sure he feels worse.

When you're diagnosed, you think that your doctor will hold your hand throughout the process. You assume that you will be given a "manual" of things to do. You believe that a path is being paved for your child's journey. After getting a second opinion from another dev. ped. six months after the first diagnosis (and the results were the same, by the way), I knew that our family was on this journey alone.

Doors will not open. Therapists will not fall on your lap. Doctors will not follow up on your child's condition. In the end, your child's future is in your hands. You look for the therapists and if you don't find one that you like, move on to (or more like "wait" for) the next. You bug the doctor's office for referrals and recommendations. You find alternative methods of treatment.


Some OT videos I bought from Amazon.com. Good for yaya and you to watch to turn playtime into a home OT session.

Only you will give up your time, money, your life, to make him better. When I realized this, things were easier. I knew I had to move on my own. That I shouldn't wait for referrals, that I shouldn't put all my hopes on a home program that has a wait-list 5 months long (btw, I still don't have a slot), that I should not believe everything I am told, read, and hear, and mostly, that I shouldn't blame.

It's easy to say, "the doctor promised me a slot in..." or (to my husband) "you're not helping me." (More on spouses soon!) But in the end, what does it do? Nothing. So, though it seems like I always get stuck in a rut and have to do this, I move on. I focus on Anton, I focus on what I can do. Never mind what others are not doing. I have to do all that I can.

Anton was diagnosed August 7. He started verbalizing requests later that month. He started playing with other kids in November. He started singing nursery rhymes in March, He started pretend-play in May. He was spelling words by June.

Things may not be happening as fast as they did during that first week after the diagnosis, but I'm okay with that. I'm okay with slow but surprising changes. I'm okay with small steps. I'm okay with all the starts that Anton has been achieving. It is because of all these small "starts" that Anton will finally finish this journey.


Anton's first nursery rhyme (or maybe the first one we understood!)