This weekend, I was at my director retreat for PALS Programs. For those of you who do not know, PALS is incredibly important to me. It is an organization that provides opportunities for individuals with Down Syndrome to create long lasting friendships and independence skills. For 2015, I will be the director PALS Poconos with my friends Annie and Ryan! I am so excited!
At our retreat we had many discussions but one that really stuck out to me was "Cuteness Porn" which was an article about the usage of "That's so cute!" when looking at pictures of things involving individuals with Down Sydrome. Of course (which we even talked about in our discussion), this can be applied across all disabilities.
Just because someone looks happy in a photo - or even in person - does it mean they are truly happy? Regardless if they are neurotypical, Autistic, or have Down Syndrome... I know that I can put a smile on my face even if deep down I am feeling like crap. I know that one thing that makes me happy is going to be completely different from the next person. We even talked about how there are universal emotions in my psychology class. But how can you truly compare sadness and happiness for ALL people?
This got me thinking about Autism - "anti-social" is often a word used to describe individuals with Autism. What is anti-social? Being "social" to neurotypical people is giving hugs, being around people, engaging in conversation does not mean that is the meaning of the "social" universally. How do we know that neurotypicals didn't get it wrong and people with Autism got it right?
They often say that people with Autism cannot discriminate or even understand the differences between emotions... But can anyone? My friend may have a smile on his/her face and I may understand that as my friend is happy... but is he/she really? What is going on deep down?
Just because Sammy has a smile on his face doesn't mean he is happy. He is unable to communicate, how will we ever know if he is truly happy? What if a smile means something totally different to him? In addition, to outsiders looking in (who don't understand Autism or Down Syndrome completely), do they see Sammy (or others) as happy and don't realize the difficulties they go through everyday? Or do they acknowledge the difficulties, but are just recognizing the happiness? Are the recognizing the happiness to avoid the problem of limited help with their difficulties? We can't even put a secure definition on "happiness," for people with or without Autism, how can we judge others on whether or no they are judging correctly? Can we judge correctly - isn't that judging... and aren't we against judgement?
Bottum line... happiness, or any emotion, is different for every individual -- whether they have a disability or not. We cannot tell the difference between emotions on a neurotypical, so why should we have the right to distinguish the difference between emotions on someone with Autism or Down Syndrome?
In other news... please help Annie, Ryan, and I raise money for our camp and PALS Programs! We will be taking place at University of Scranton July 29th-August 4th. We plan to take our campers to the Pizza capital, Poconos, baseball game, hang out in the town of Scranton, and much more! -- please, PLEASE, PLEASEEEEEEE go here to donate!
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.