Today, when I was walking on campus, I suddenly started to hear someone singly...and not well. My first thought was "Are you kidding me?" When I looked up to see who it was, it only took a moment to realize he probably had Aspergers.
If someone like me is completely aware of Autism and still had negative thoughts, can you imagine what others were thinking? No one said anything, no one made fun of him... but I'm sure most people were thinking what I was before I realized. The difference is, once I saw him, I knew something was going on. Did he look different? No. Did he have a big Autism sticker on his head? No. So, just because I'm used to what its like and can see it in mannerisms and other things, that doesn't mean other people can.
Most people probably had no idea he had Aspergers. Most people were probably disgusted or embarrassed for him. Why? It's out of the ordinary - it's not what "socially acceptable" to sing along to your iPod loudly in the middle of a public place. That's the problem - no one understands what Autism is, or other disabilities. They expect things from everyone around them and anyone who doesn't abide by this social rules, is weird.
This guy could love singing. He could have been celebrating a good test grade. This could just be a way for him to recollect himself and decrease stress. We don't know! We all do things differently. Who are we to judge? And even if we don't judge, this is why we need awareness. For people to be able to hear this kind of singing, to look up, and realize. Not so much that it's okay for him to sing out loud and be out of the ordinary because he has a disability, but because everyone has a right to do so.
What's sad is that people are so unaware of Autism, they don't understand it, so things like this are "wrong" because of our social norms. He could've been made fun of - luckily he wasn't, but no one should sing their heart out and be scared to because they may get picked on. If everyone just had a little understanding, maybe we would be less likely to hurt others, or expect things from strangers that we consider "normal." There is no normal.
Can you measure passion? What is more important - passion or dedication? How can you measure either of those?
I'm not sure that there is an exact measurable amount that equals the ultimate passion or dedication. However, the push people have towards something is what speaks to the level of passion or dedication. Passion is the person who paces in their apartment for an hour over a decision that was made. Not so much a decision that directly impacts them - but a decision that impacts what they care about. Passion is the blood, sweat, and tears that go into planning an event. Not for the recognition, but for the cause. Passion isn't about your title or level of ownership over something - its the people who lay awake at night trying to find a solution or decide what if fair for everyone, not just what looks good.
I just got off the phone with a dear friend of mine, who has no direct link to Autism himself, just has dedicated the majority of his life to advocating, helping, and spreading awareness. He is probably one of the most passionate and dedicated person I have met within the Autism community - knowing him has been life changing for me, let alone for all of the individuals he helps. He is currently planning his own event for spreading awareness for Autism on his college campus. So, let's just stop - wow, you rock, Ryan. This kind of stuff gives me hope, knowing that there are people like Ryan out there for people like my brother. The fact that you took this upon yourself to just do it because you felt it needed to be done, not because it was a requirement for some class or club. Anyways, he is solely doing this to spread awareness and help people learn what Autism is - one of the most needed things in this community. However, he is getting pressure from other clubs for why their name isn't on the event.
Why is it about who gets their name on the event? Why is it all about the business and advertisements? Why isn't it just about the cause? Why isn't it about supporting each other toward a common goal? There is already enough negativity and ignorance out there - why are the people trying to help also participating in it? Why aren't we just moving forward and coming together to spread awareness for Autism? Why does it have to be about money or the credit - why can't we just do it because its the right thing to do?
How do we expect people to want to try and understand Autism when we act like this? I don't care how much money is donated to Autism Speaks or any other organization for Autism - I'd be happier knowing that every single person in the world knows what Autism is, knows these individuals can't help some of their actions, and is more understanding when they see such a person out at the store or restaurant.
What is the point of a cure? Of research? Yeah, it's great... but what does it really do for the people suffering from Autism right now? Great! You solved the puzzle - you found the cure for Autism - in 3016. What does that do for my brother now? That money could've helped open an after-21 program or give therapy to those who can't afford it.
It's not about the credit. It's not about the donations. It's not about the cure. It's about the person.
Open up a Google search. Type in Autism. Type in Down syndrome. Type in Cancer. Type in brain injury. Millions of results pop up. Type in a few more words next to the disorder or disease or syndrome and you'll find the exact answer you need.
Recently, I starting researching Landau Kleffner Syndrome. Another thing that my brother is diagnosed with - in fact, it is the first thing he was diagnosed with. What comes up? Barely anything.
Finding a local place to intern was impossible. Finding information about it much more than it is rare and incurable was impossible. After hours of researching - I can honestly say the only thing I know about this topic is what I've witnessed with my brother.
I want to learn more. I want to see what people are doing about it now - after the childhood has passed. I often struggle with how can there be one or two main ways to help people with Autism? Every single person is completely different within that diagnosis. So, what can they do for someone who is diagnosed with Autism and LKS? There so little known about LKS, what works and what doesn't.
Many people are wrongfully diagnosed with Autism when they have LKS. This has me wonder again - if so many are wrongfully diagnosed, are the ways that have been deemed "successful" within Autism really successful - or did they just get lucky? And vice versa - is there really little to no intervention for individuals with LKS - or have they just not put all the pieces together?
LKS is an epileptic disorder. Seeing what a seizure does to my brother - basically making him restart his brain in some ways. Sometimes, he loses entire ideas that he is learned. This is insanely scary. To think, a 30 second event within your body can ruin parts of your brain, set you back to square one. If this goes untreated, one seizure could ruin so much. Imagine if you are constantly having them - especially so shortly after being born? What does that do to development?
I know that there are so many great ways to help ease the symptoms of Autism. However, how can we help those with Autism that aren't gaining from the already known methods? And what if LKS was missed with these individuals? What if there was a better treatment for those who have Autism and LKS? Even though Autism is so closely related to LKS... What if the method to treating Autism (whether they have LKS and Autism or just LKS) is actually being counter productive? What if it's making it worse? Or sending individuals back to step one?
Autism from a sibling's point of view...
My name is Paige and I am 24 years old. I graduated from Towson University with a Psychology Bachelors Degree. I am now working towards my Master's in Education of Autism and other Pervasive Disorders at Johns Hopkins. I am also a Behavior Data Specialist at the Kennedy Krieger Institute Neurobehavioral Inpatient Unit. My younger brother, Sammy, is 19 and has Autism. He is completely non-verbal, unaware of safety, is not toilet trained, cannot get himself dressed, and has difficulty with everyday activities that we all take advantage of. He works harder every single day of his life than anyone I know and he always does it with a smile on his face. He is my true hero and inspiration and because of him, I have dedicated my life to advocating and creating opportunities for individuals with Autism. I hope that I can make him proud and this blog is just a small part of the awareness I hope I can create about Autism and support other siblings impacted by Autism. I love you Sammy - thank you for everything.