What I am about to write about may make me seem like I am a snob, a know-it-all, ungrateful, or even bratty. But please know, that is absolutely not it. I do not want to offend anyone and for it to come across that way because I do not think I know it all. I do not think I have nothing more to learn. It's just how I feel as a sibling and from my own experiences, so please do not take it the wrong way.
I've realized I need to put those kinds of things out there after many events, but especially one in particular that happened recently. I do have a strong feeling about the fact that I believe that since I lived Autism 24/7 for 17 years, I do have one up on even the most intelligent therapists and doctors. Don't get me wrong, these people would school me in the terminology, identifying anatomy, creating top notch behavior or medical plans. But at the end of the day, unless you have lived with Sammy Talhelm - you know nothing about Autism. And by that I mean, you may know about Autism from your textbooks or experiences. You may even know someone with Autism. But that is all you know. You may even know a lot about Sammy from your interactions! But, you don't know ALL... because every single person with Autism is completely different. Sammy's way of life or exact characteristics may change every single day. With that said, I don't even know absolutely everything.
Sammy was diagnosed when I was in 2nd grade. That means, I have been the therapies, doctor appointments, trainings, etc. for all 17 years of his life. I was included in the extensive ABA training we had to for our at-home therapists when I was just in 3rd grade. When I say I know ABA and other therapies back and forth, up and down; I'm not trying to sound like I can't learn anything from anyone else. I want to know more. I want to learn as much as I can. So I can help him. I'm just saying that with Autism, and having a sibling with Autism, my life is ABA 24/7.
I know there are always more things to learn. I know there are always new things up and coming. I know there are always going to be more ways to do one things. I am always going to welcome an outsider's point of view. I am always going to appreciate the things people do, plan, and create for my brother. I am always going to read that interview, news article, or section of the textbook that has something to do with Autism. Autism is my life. ABA is how I interact with Sammy in a lot of cases. I'm not being disrespectful when I may seem bored or think I know it all. I don't. But, I'm sure families who have individuals with Down Syndrome or Cancer are sick to death of hearing the same old basics over and over when they go to a training, class, conference, etc. Think of how you feel at the beginning of classes every semester - it doesn't matter if you're in grad school, you're going to spend the first week going over the basics you learned in every 101 class. Are you an expert - no! Are you bored - yes. We may not know everything, we may know a lot about the basics of a subject we see ourselves as experts on. But here's my thing - I know about it, I know it works. Why isn't Sammy talking, using the toilet, doing everyday 17 year old things? Where is the next theory? What is the next big idea or plan?
*ABA: Applied Behavior Analysis
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.