Category Archives: the wonderful world of autism

Autism: Above and Beyond

When you meet one person with special needs, you’ve just met one. There are a lot of different others. -Gerard Joseph Atienza, Autism Self-Advocate

Today, I had the honor of meeting a passionate self-advocate of autism, a teacher, and a blogger, the “autistic big bro” himself, sir Gerard. He spoke for my former organization, the Ateneo Special Education Society, and afterwards I got to sit with him and talk. I’ve been following his blog for a while now, and I have to say, I’m a fan. He’s really quite inspiring. 20130715-002854.jpg

I became an even bigger fan when I got to talk to him. The quote above is just one of the beautiful things that he said in his speech. Our talk after his speech had a more personal vibe, and it was amazing how easy it was to talk to him, considering I don’t do well with talking to strangers, let alone people I idolize. He told me a lot of stuff about himself, and I felt that I could do the same, so I told him about my plans for studying Applied Behavior Analysis (ABA) therapy as a masters degree. He gave me some advice about it, told me that a background on special education would be helpful, seeing as it goes hand-in-hand with intervention anyway.

I had a similar conversation just this week with a neuropsychologist. She told me that maybe I should get a stronger foundation first on something more general, because ABA is a specialized field already. Long story short, I didn’t really take her advice. But now, to hear a similar suggestion from a person with autism AND a SpEd teacher himself, I am definitely reconsidering.

I’ve only met a couple of autism self-advocates in my twenty-one short years, but they have never ceased to amaze and inspire me. Sure, the neuropsychologist I talked to was very nice and had a lot of credentials, but there’s one thing she didn’t give off that the self-advocates did: passion. I’m not talking about the dramatic story-telling tear-jerking kind of passion, but simply the easy conversation wherein you can feel that, “this is something worth listening to.” I’ve had the same experience with a father of a person with autism, who was the first one to inspire me to pursue this career. He was simply talking about his son, and just quickly mentioned the need for more therapists in the Philippines, and he got me.

Autism advocates are amazing that way. They inspire without even trying. I asked sir Gerard what steps a self-advocate can take to show people that persons with autism are different, not less. He said, “well, this; by simply being me.” I don’t think I’ll ever get to cover how inspiring they are by writing about it. I’ve had a year-long thesis about that and it didn’t turn out so inspiring. I guess you just have to hear from them yourself, to get the feeling. This much I can say though, considering what they’ve been through as persons with autism, it would take a lot of strength, courage, and faith to keep fighting their fight. It’s not easy, but they do it, and they don’t just survive it, they shine in it, going beyond expectations and showing “ability over disability”; showing that they’re as human as you, me, and everyone else, that their condition does not define them.

Thank you, sir Gerard, and all the other autism advocates out there, for continuously showing the wonderful side of humanity, and for simply being.

Red Velvet celebrates 1000 Ausome Things #AutismPositivity2013

Before anything, I’d like to invite you all to join this flash blog, especially if you have firsthand experience with persons with autism. To join: Publish your post in the following title format: “ [Your Blog] celebrates 1000 Ausome Things #AutismPositivity2013″, post it on every social networking site you have with hashtag #AutismPositivity2013 and share. Oh, and do submit here even if you don’t have a blog 🙂

Admittedly, I still find it hard to write about anything autism-related even after three months of not writing about it in thesis. So I’ll make this simple. I also can’t post any pictures because I didn’t really ask permission.

I’ve met quite a lot of persons with autism, and, to break the first stereotype, they’re not all the same! Quite the opposite, they possess a huge variety of skills, personalities, characters, and traits. Two common things though are, of course, the symptoms, and their self-advocacy.

It’s really inspiring, to see adolescents with autism fight for their rights. Hope. They have it, even if society around them does not. And they’re right. The autism spectrum disorders are disorders, not diseases. There’s nothing wrong with having it. Let me walk you through the persons with autism that I’ve met.

The first one that struck me is a teenage boy in one of the institutions I’ve visited. Let’s just call him Fred. Among other autism symptoms, Fred has a little speech impairment. But that doesn’t stop him from pursuing what he loves: music. He has a good ear for tunes. And what really amazed me was his guitar skills. He can play a whole lot better than your average neurotypical guitar player (me included). He can even play it on his back! Of course he has other talents, but wow, those guitar skills are really admirable!

Second is one of our thesis respondents. Let’s call him Jay. If you asked Jay to tell you about his autism, you better be prepared for a long speech about his life. It’s a pretty good story too. What I love most about Jay is his drive to let his story be known and accepted. He’s one of those self-advocates that can really make you want to join the cause. It’s inspiring to see such pride and dignity in an adolescent with autism.

Another respondent from our thesis is Nikki. She’s a diva. And I mean diva. She can belt out and sing the craziest tunes, and has amazing stage presence! Of course, being a diva, she also acts like one, which would have been annoying if she didn’t laugh afterwards and show you that she doesn’t really mean it. Raised without much proper intervention, she was put through some improvised “intervention” such as modeling for discipline. Goes to show that you don’t really need to “change” them. Truly, Nikki is an inspiring, sweet, light-hearted diva.

Mr. congeniality I call him, my friend’s brother. Though I wouldn’t be surprised why he’s like that, considering he has such cool and supportive parents. I’ve only met him twice, and only spent a few minutes with him, but that was enough to charm me. The fact that he can openly talk to strangers in a comfortable way shows that this friendly dude really is something! So, no, they aren’t really anti-social as the stereotypes say. Far from it.

Lastly, I know it’s bad to play favorites, but I can’t help it. I’ve been friends with this boy for two years now and I still get excited over the next opportunity to see him! Let’s call him Jude. My first encounter with Jude was a handshake and a formal introduction. Proof that persons with autism can follow some norms. Jude has many talents, more than I can describe here in this entry, but what’s special about him is the friendship that he offers. A sweet and charming boy, Jude always finds a way to melt my heart. Just last year, after not having seen him for a long time, I wondered if he still remembered even my face. Lo and behold, upon entering his school, he quickly stood up and greeted me by my first name. And in one of our organization’s events that I couldn’t attend, I was told that he even looked for me. Simply the way his face lights up each time we visit is heartwarming, and to be honest, the main reason why I decided to “specialize” in autism.

I can go on about these five people, or I can give even more, but I think this should suffice. After all, there’s no comparing first-hand experiences with persons with autism. It really is wonderful. To conclude, I’d like to tell each and every person with autism: there is absolutely nothing wrong with you. Don’t let anyone bring you down, and most importantly, don’t bring yourself down because the people around you are fighting with you to show the world just how wonderful you are. You are different, not less. And with that difference, you can shine.

Oz and Autism

I’ve written a couple of philosophically based posts now, and one on psychology, and God knows how many about Oz, so it’s quite a surprise I have yet to write about my one true passion, my advocacy for persons with autism. Well, I have my reasons: first, I’m scared I won’t do it justice. After all, I’m not particularly close with any person with autism. I know a lot of them, but not to the extent that I’d truly understand them enough to speak for them; Second, autism seems too wide a subject. And as I’ve been following a lot of autism-blogs with their specific posts, I wouldn’t know what to add anymore. Third, well, it was our thesis. I’ve written about it for a whole academic year, so writing a blog post about it didn’t seem so appealing.

So after spending three days on my last evaluation seminar in my dear organization, the Ateneo Special Education Society, I realized that I did have an avenue to discuss it. I realized that this is what project miserably wicked was all about. While that project didn’t turn out very well, a look back at why I wrote it in the first place helped me see the connections. So here goes, Oz and Autism. Even if you’re not a fan, do take time to read it, I’ll try to make it understandable.

I’m 99% certain that neither Gregory Maguire (Wicked Years author) nor Stephen Schwartz (Wicked composer) were autism advocates, but they’ve created such a relevant story in Wicked for the advocacy! Oz, a land of diversity, had all sorts of creatures, among them the Animals. These Animals were different from animals in the sense that they had human intellect, and different from humans in the sense that they looked like animals. Now before anyone gets offended, do understand that these Animals are more human than anything else, and if they did really exist in the real world, they should be treated as humans too. That’s Elphaba’s advocacy. Case in point, Dr. Dillamond, a professor in Shiz University in Oz. He teaches history, and he’s as good as any other teacher out there (except for the fact that he can’t pronounce Galinda’s name right). He was one of the last few Animals left that stood for his right to speak.

Dr. Dillamond

Dr. Dillamond

You may be starting to get the picture now. Good job. Animals in the Oz world are like persons with autism in this world. They’re really no different. Their mannerisms and whatnot may be different, but their capabilities certainly aren’t. However, certain people like the Wizard and Madam Morrible (the antagonist) think that the Animals are lower beings, that they did not deserve the same treatment as human beings. What’s sad is that these people are quite influential, so they have followers who end up believing the same thing. And when advocates like Elphaba stand in their way, well, pop goes the green witch.

Elphaba is the passionate advocate. She really tries to understand the Animals’ plight and wants to take action for them. Screw bureaucracy, screw structures and politics. Elphaba just wants what’s fair for the Animals, and she believes that this shouldn’t even be a problem in the first place if only the leaders, influential people, and media would recognize them. In the real world’s case, media plays the role of Glinda. While it is admirable how NGOs and even some government officials do recognize and fight for PWAs, they might not be influential enough, especially here in the Philippines. Here, media is the most influential thing. Whatever people see on TV or in the movies, they emulate. This is a sad fact because honestly, Philippine showbiz needs a lot of work, as can be seen in the controversial series, Budoy, which gave Angelman syndrome a bad and unrealistic image. I’m sure they meant well with this series, as does Glinda most of the time, but they end up being more selfish than anything else. They care more for their own public image and ratings than for the advocacy itself, which affects the way they do show their “advocacy” (if you could call it that).

"Popular, you're gonna be popular"

“Popular, you’re gonna be popular”

The Wizard is even worse. He represents the hypocritical bullies. He pretends to help out but his actions are actually discriminatory. I didn’t know such hypocritical bullies existed until I got deeper into the autism community this year. It’s sad that such large scale organizations exist and are being considered “wonderful” by many, even by advocates. His act of silencing the Animals is similar to how some of these organizations try to “prevent” autism, like it’s such a bad thing. Some of the things they promote are prevention before birth and overstimulating so that they can be “cured”. It’s a selfish outlook in the sense that they’re acting to make the PWAs fit into our world, when we should be the ones adjusting for them. Why should they be forced to live like us? They’re different, not less. So they have the right to stay the way they are.

Obviously, I’m a biased because I love Elphaba, but her principles do match mine. Persons with autism should never have the problem of struggling to fit in with us, with what society and the masses want. They shouldn’t have to undergo overstimulation because it just hurts them. They deserve full acceptance and they deserve their own rights. True, we can’t all be passionate advocates like Elphaba, but at least let’s be fully accepting of them and not treat them like they’re beneath us.

So there you go, that’s my Oz-take on the world of autism. And hey, if you want to read our thesis, do PM me. It’s about the narratives of adolescents with autism in the Philippines. Or you could follow these awesome organizations on twitter: https://twitter.com/autismphils and https://twitter.com/AteneoSPEED Thanks for reading, and munch on!