week 10 

10/24/16 - 10/30/16

Faith Jegede - What I've learned from my autistic brothers

I'm so happy I found this video! Having worked with kids with autism for over two years, I couldn't agree more with every word she says. Faith Jegede perfectly articulated how I feel about autism and how truly wonderful, loving and so incredibly human it be. 
I finished an entire bachelors degree in psychology and thought I had some general ideas about human behavior. I wasn't even planning on working with kids with special needs, but I needed a job and the opportunity came so I took it. And then I pretty quickly realized that the basic degree in psychology, while fun, didn't really teach me any skills. I was not prepared.  I am so very grateful that the two companies I worked with while skills training were by the best luck, two of the top pioneering companies - not only in the state of Hawaii, but the entire field of autism in general (its steadily growing, but its not That big yet). Both companies ensured that each skills trainer got a minimum 40 hour training in Applied Behavior Analysis (ABA) prior to getting the first case assignment. ABA therapy is fundamentally simple conditioning: reinforcing the desired behavior and NOT reinforcing/ignoring undesired behavior. It's so straight forward and simple and effective, its GENIUS. I know it may not feel like the most proud title to wear, but humans are animals - and we can be trained.  We do it to ourselves all the time even - that's pretty much what habits are. So ABA therapy for autism is essentially a special kind of habit training where we are taught to break down each behavior (like brushing teeth) into many VERY SMALL steps ( 1. get brush, 2, get toothpaste. 3. open toothpaste cap. etc) and then essentially just chaining them together. So we would start with least restrictive prompting (specific for each kid) and show them what to do, help them do it, help them remember to do it, and then praise for each time they get closer to the goal of independence. Brilliantly straight forward, achievable goals. 
But the best most useful part of that training was not only what to do as a skills trainer, but HOW to do it. Most of the kids I worked with were nonverbal and even the ones that were technically verbal, conversations had to be Taught. One of the defining characteristics of autism is the deficits in social interactions- its not just that they cant do it, its that they dont WANT to, not in the same way other people do. If they can communicate, then the motivation to communicate is either to get something/someone or get away from something/someone- they're not just gonna come up start small chatting- that just isn't "built" into their nature. So in order to be an effective skills trainer, I thought more about my patients' Motives for behaviors instead of their Outcomes. The amazing thing about these kids that if you just sit there, and do nothing more than just observe, their attention will quickly turn to whatever they are into and they'll just forget that you're there- most people would be so very aware of being observed, especially from only a few feet away, but not these kids- they will start playing or doing whatever they want in their own special worlds. It became second nature for me to automatically follow their gaze - because where their eyes were going, the bodies would follow,  It was really incredible to watch someone be 100% completely their authentic self- without even the concept of consequences- what a truly humbling perspective. You see everything- the natural fear, sadness, surprise, frustration, excitement, joy but in the most purest forms. These kids don't get jealous (because jealousy requires concept of comparison between oneself and another, which is one of the HARDEST to teach) - it may look like it , but what's really happening is that they see something that they want, probably try to reach and grab it, and if unsuccessful, then express frustration, For better or for worse, it really IS that simple. and it absolutely fascinates me. I really wish I could even for a moment be able to see things the way they do and especially to feel as distinctly and vividly as they do!