Where Autism Awareness Should Lead

Other than in private exchanges I had with my family in Messenger group chats, I didn’t really air out any thoughts on the recent controversy over the incident of PWD-discrimination at Plantation Bay, an exclusive and expensive resort in Cebu. It wasn’t because I didn’t have any strong feelings about it, but because I felt so strongly that I would have reacted based solely on emotions, and that wouldn’t have helped the cause of autism awareness, an advocacy I’m very passionate about, any.

One with the Public Response

I was gratified to read the outpouring of support for Mai and Fin Pages as well as of indignation at what they experienced while vacationing in Plantation Bay. Like many, I was saddened and angered by the treatment they received while at the resort. I was similarly outraged by the initial response (now deleted, but the Internet is “forever”) issued by Plantation Bay resident shareholder Manny Gonzalez. Mr. Gonzalez was impressively articulate in expressing his thoughts. Unfortunately, his eloquence was misdirected. It laid out a misinformed and narrow-minded argument that belied the level of education and accomplishment his credentials page enumerated in painstaking detail. And like the masses, I was enraged by the very unsympathetic, very judgmental, very WRONG posit he put forth that Fin had just been misdiagnosed, and that his behavior was due to parental neglect and not to autism.

Did I feel inclined to storm the doors of the resort and scream at this seemingly pompous fool? Yes. Did I want to rally the people to boycott him and Plantation Bay, and generally make him pay for his scathing response to a genuine complaint that resonated with the depths of my very own heartbreak? Yes. Did I want to print out his sorry excuse for an apology letter and force-feed it to him? Yes.

That was my raw, unprocessed reaction. It was a maelstrom of fury and sorrow probably powerful enough to burst a vein. This incident gave force to my fears and worries. It threatened to snuff out the hope I felt for the possibility of an infinitely kinder, more understanding, more tolerant, and thoroughly inclusive society. It fueled the daydream of creating another world for my children and others like them.

It was upon reading his very hoity-toity résumé that my perspective shifted. He got his MBA in 1974, before I was even born. This man was probably the same age as my own parents. He is from a very different generation. He grew up with a very different mindset within societal norms that have drastically evolved through the decades. My own father, a great and godly man in my eyes, who loves his autistic grandchildren with every fiber of his being, feels that the best, most practical solution for “extreme” (obviously a relative word) special needs is institutionalization, segregation. He thinks that they would be safer there, better taken care of, and the neurotypical can function with better efficiency sans the constant vigilance necessary in the care of those with special needs. Like I said, such a position comes from a different time, a different way of thinking.

Manifestation of True Awareness

There are many out there like Manny Gonzalez – people who will choose to quickly judge and act upon their erroneous judgment. And then, in the face of public censure, they will offer a half-pantsed apology that clearly shows they haven’t actually budged an inch in their position. We can take offense, demand retribution, but, more importantly, we can continue to work toward awareness.

Almost everyone has come across the term “autism” and encountered somebody on the spectrum. Most people have a vague idea of how a person with autism is limited and challenged. True awareness, however, goes so much farther than knowing the dictionary definition of autism. True awareness comes with compassion and empathy, leading to acts of kindness.

I remember another mother venting about the pastor of her church. It seems that her son with ASD was able to practice with the rest of his Sunday School class for a special song number. That had previously been unheard of. The boy hadn’t been inclined to participate in the past, but that time, he was interested and he was able to stand with the group to sing instead of running off. During practice, the mother watched, incredibly thrilled about this particular milestone when the good pastor walked up to her and said, “Is it a wise choice to have him up there? He might ruin the performance.” The mother expressed her hurt over the remark, but she also had the grace to understand where the pastor was coming from. Obviously, it was from a time when children were forced to toe the line and imperfections were dealt with through their removal. People who didn’t make the cut, well, simply didn’t make the cut. Exclusion was the norm.

This account, mild though it may seem, is particularly disquieting. Inclusion should be a right, not a privilege. I can’t tell you how many times unintentional slights were directed at my boys for their autism, automatically excluding them on the assumption that they couldn’t do what the activity entailed. There was no effort at all to accommodate them, to offer certain allowances so they could participate. “This was the neurotypical’s world, the neurotypical’s program. It wasn’t the neurotypical’s duty to pander to the atypical’s different abilities.” This perspective must make so much sense to many, and yet it cuts and it stunts, causing hurt feelings and missed opportunities for progress for all involved.

Another story I remember is about a person with autism attending his high school graduation. His parents were worried that he wouldn’t be able to attend the ceremony because of the level of noise expected at such an event. Unfortunately, the man (he was already 21 at that time) wouldn’t be able to tolerate all the clapping and boisterous cheering. It is common for people with ASD to have sensory issues. Loud noises are often difficult, even downright painful for them to process. The entire auditorium, however, agreed to have a silent ceremony. The principal said that the decision was very characteristic of their community. Such a display of true awareness was incredibly heartwarming. In the current Pinoy vernacular, let me just say, sana all.

PWD Discrimination and the Law

There would be those who would struggle to make concessions and adjustments to their standards and operations in order to accommodate special needs. They may be good, decent people and still not get how inclusion is always the right choice – and, actually, in many countries, including the Philippines, the only legal option.

Discrimination against a person with disability, as the Plantation Bay administration is painfully learning now, is against the law. Unfortunately, not every PWD or parent of a PWD knows enough to raise a stink when discrimination occurs. Many of us are inclined to be apologetic about the inconvenience, the bother, the disturbance… the supposed perjuicio that our presence causes, and be resigned to the idea we just don’t belong and to the conclusion that the lack of welcome is completely acceptable. It is not, and the law is on our side. Of course, a law being enacted and a law being enforced are two different things. I’m not a lawyer so I’m not going to delve too deeply into the legalities of the matter. I just want to emphasize that the Magna Carta for Disabled Persons goes beyond the discounts PWDs can avail themselves of.

Fruit of Awareness

I have so many hopes and prayers regarding my own children’s autism that my brain just goes in a zillion directions when I try to talk about them. I mean, we have all sorts of awareness campaigns. Did you share a touching post on April 2 (World Autism Awareness Day)? Did you light it up blue? Did you add a spectrum ribbon or a jigsaw puzzle piece to your profile picture? These are good, appreciated steps, but I especially love it when people exercise this promoted awareness – when they offer a lending hand to a mother whose child is in the throes of a meltdown, when they just smile understandingly when an autistic child stims noisily at the next table, when they insist that our autistic children are welcome at their wedding, when they’re willing to amend tradition, the standard way of doing things to be inclusive…

We have a long way to go, but things are getting better. We can look at Mai and Fin Pages’s experience and see the bad, but we can also look for the good – the overwhelming support from netizens, the action being taken by government bodies, and the deeper awareness resulting from this unfortunate incident.

The Blessing of Autism

I hadn’t always felt this way, but I consider my boys’ autism a blessing. Our life is rife with miracles, as all of yours probably also are, but we are better able to recognize the wonder in the minutiae, thanks to this “disability.” Life with autism bestowed upon me such priceless gifts: patience, kindness, empathy, and many more.

In the end, I have to feel sorry for Mr. Gonzalez. He seems to have never encountered an autistic person that he had to resort to Google to try and explain it. Sadly, he also seems to have stopped at one paragraph because the Internet has so much more to say about autism. All I know is that if there were an autistic person in his life, he wouldn’t have dared to say what he did. I’m also sure that he would have been an infinitely better, kinder person for it.

The First Time I Share About Our Autism Experience

Puzzle ribbon

Now that Autism Awareness Month is over, I wonder just how much more aware people are of the condition. I have a feeling those who bothered to read posts and watch videos were mostly those who were already aware and probably dealing with it in some capacity. Those who shared a witty slogan or two were likely happy to leave their contribution at that. Did you wear or decorate with blue? Yeah, that was supposed to mean something.

I don’t know that I’m ready to write about autism. I don’t know that I have anything sensible, let alone helpful, to say. When it comes to my son’s condition, I still have no answers, no Eureka moments that other families dealing with ASD (Autism Spectrum Disorder) have been blessed with.

You can say that I’m still floundering. It’s not even being back to square one. At square one, I thought the solution was definitive. The developmental pediatrician had made her diagnosis and subsequent prescription, so I expected to see significant results in time. That was very naïve of me. Autism does a magnificent job at confounding the most logical and learned minds. Is it neurology, nutrition, genetics…? I don’t know. Nobody actually knows. Experts, non-experts, and people with barely a nodding acquaintance with the subject all have their theories, but autism remains an enigma. I’m still not comfortable with that. I don’t think I ever will be.

But it’s my reality and I’m learning how to cope. I still alternate between acceptance and anger. And guilt. There are people who are great at playing victims, and then there are people like me, who would claim responsibility for causing the decline of modern civilization. My natural inclination is to spend an unhealthy amount of time blaming myself for the ills of my personal world.  These days, my son’s autism is almost always at the top of that list. At the end of the day, however, no matter my frame of mind, I have no choice but to take things a day at a time.

My second child was diagnosed to be on the spectrum two years ago. He had just turned three. He’s a handsome boy with a charming cleft chin and a gorgeous gaze that snared you whenever he deigned to bless you with eye contact, which was a rare treat indeed.

It just seemed like he was too cool for us, something that didn’t fit with toddler behavior. He didn’t want to listen to you. He didn’t respond to his name. Nonetheless, he didn’t walk on tiptoes. He didn’t exhibit any propensity for stimming. His verbal communication was minimal, but there were enough bursts of language to make us hope that it couldn’t possibly be.

Still, there were very clear delays in speech and social interaction, so my husband and I decided to take him to a developmental pediatrician. No blood was drawn. No lab test was conducted. There was a checklist though. My husband and I were interviewed, and then, finally, the doctor assessed our boy through play. An hour or so later, we had a diagnosis: he exhibited developmental progress of a 1.5-year-old and manifested autistic behavior.

When I finally had that official confirmation, I spent a whole lot of time in denial and in ignorance. I thought we could beat autism. We would therapy the heck out of our boy so he’d get caught up in areas wherein he exhibited delay. I would make it my main mission in life and would not rest until my son was developmentally caught-up.

Them’s fighting words. The fervor, however, fizzled as my plate teetered with all my other responsibilities. I was working, nursing an infant, homeschooling, doing what I could so the house didn’t completely fall apart… The solid effort I imagined putting in to power through the challenge I had such a laughably simplistic view of never materialized.

It wasn’t just my pitiful effort to the initial intent to railroad autism out of our lives; it was autism itself. There’s a name for it, but, oh wow, what an unknown entity it remains. The more you try to understand, the more you see that you can’t really fully know. That spectrum is a jumble of overlapping variables. The compartments are but an illusion. Expectations are not encouraged.

Still, we had to do something. We followed expert instruction and sent our boy to occupational and speech therapy twice a week for over a year. Unfortunately, results were minimal. While it’s true that we sucked at supplementing therapy at home, I just felt in my gut that this wasn’t the right approach for helping our son.

He had some good therapists, usually the older and more experienced ones, and he had some who were unsatisfactory. For instance, one was always rushing through the session and ending it with 10 to 15 minutes more to spare. That was obviously a great way to not give us value for our money, so I requested a different therapist after I’d noted the pattern.

Another therapist frequently gave negative feedback on my boy’s performance. When I got to observe a session with him, I noticed that he spent a lot of time on massage that was supposed to calm my son down. That showed itself to be a problem. First, I’m not comfortable paying occupational therapy fees for sessions that were half-massage. Second, he was using a product that I hadn’t approved of. My son has very sensitive skin and many products, even the hypoallergenic baby variety, make him itch. Third, all that massage made my boy sleepy. No wonder he was cranky and reluctant to perform.

This same therapist also asked me about play, and I replied that my son was really taken with straws. That gave him a pause, and with a look of concerned censure, he informed me that that was not developmentally appropriate. At that time, all I could do was shoot him a confused WTH look. “Duuuuuuuude, are you aware that you’re dealing with kids who were sent to you precisely because of their developmental delays?” In retrospect, there were other red flags I’d caught from that conversation. He just didn’t seem to know much about autism, so we decided that one wasn’t getting our hard-earned money either.

And then there was the front desk clerk. There was a time when I picked up my son a couple of minutes late. Unfortunately, this was during the time of the therapist who liked to cut her sessions short, so it’s possible that my son had already been waiting 10 or more minutes. I was amazed to see my boy sitting quietly beside her. That’s pretty much unheard of. He’s not one to sit still without something truly fascinating engaging his attention, and even then, he’d still feel the urge to move around. As we walked to the car, I noticed that my son was upset – not meltdown-upset, but more timid-upset, something also quite unheard of. The alarm bells began clanging in my head. I didn’t know how to find out if she’d bullied my child in any way to make him stay put, but I resolved to keep my eye on her and to never be late ever again.

After more than a year in, we didn’t see any marked difference in our child. His therapists would eagerly report his progress, saying now he could do or say this or that, and I’d have to pop their excited bubble and say that he could already do those things even before. I don’t mean to deprive them of any credit at all because there were some new things he did learn, but in my mind, I’m wondering if they could be attributed more to natural progression than anything else.

In the end, we decided to pull him out from the center and regroup. It was temporary at that time, but now I’m pretty sure we’re not going to use that place again. While in therapy hiatus, I’m researching all I can and trying out different approaches that speak to me. ABA, which was what the center practiced, didn’t feel right to me. If it were a medical treatment, I’d call it invasive. I’m always one for a more holistic and gentler approach. In autism, Son-Rise seems to fit that bill. The program’s crazy expensive, but I plan to order the starter kit. If it brings forth signs of the miracle I’ve been praying for, then we’ll try to raise funds for the intensive program, which includes staying in Massachusetts for a short period of time.

Besides therapy options, I’m also looking into diets we could try. GFCF (gluten-free, casein-free) seems to be easier than the Feingold one. All those natural salicylate restrictions threw me, but I might give it a whirl if others don’t make any difference. I’ll probably begin with the easiest diet and hopefully it will already work wonders so I don’t have to try anything else.

For now, this is my contribution to the autism awareness cause. Some contribution. It’s purely anecdotal.  It’s rough and random. Any comfort or enlightenment derived from it is unintentional. I don’t want to pretend any wisdom on my part. I don’t want to pretend to have already come to terms with my son’s autism. I still want it gone.

I know the “right” attitude to have, but if I’m not feeling it, I’m not going to pretend otherwise. Does this mean that I’m not fully loving my son because I want his autism gone? No. He is loved and cherished no matter what, but it’s because I love him so much that I don’t want him to suffer through the challenges the condition brings. If your child had a disorder, wouldn’t you just rather he didn’t have it, whatever it might be? It’s not about being realistic, but about your heart’s desire. After all, I believe in a God who makes all things possible, so I’m not going to put a limit on what I can hope for. In the meantime, we do what we can to make the best of our situation.

Through it all, I pray. Despite the emotional and mental roller coaster ride, I find rest in the fact that nobody loves my child as much as the Lord does. Autism is just another symptom of this fallen world, but I trust God’s love for us to be perfect despite our imperfections. His hand is on our family. I don’t know what to expect from our journey with autism, but I know to expect goodness, faithfulness, and wonderful works from God.

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