Thank you for visiting Decode Autism. This is a new experience for me, starting a website. My friends and family encouraged me to share our journey with Autism and hence, I started this website. It’s still brand new and there might be a few kinks, but hopefully we will get that fixed as we go along. I am sharing our journey with the hope that there may be some aspects of our journey that would be interesting or helpful to you. But more importantly, I hope we can discuss our diverse journeys with Autism to learn even more.
While I am bringing this information together, this journey would not be possible without the support and encouragement of family, friends, and all the amazing professionals that have touched our lives. So before moving forward, a special thanks to everyone who has been a part of our journey and who have taught us so much.
Autism is a complex world. We have seen Autism from close quarters with my younger brother with Autism who is 21 years old.
Early on, at the surface, it seemed that my brother:
- Did not show emotions and could not develop relationships
- Had limited skills and capabilities, based on his how he answered rote and standard questions and tests at school
- Could not communicate and hardly spoke a word
- Was detached in his own world
But, on closer look, a journey of small discoveries made a big difference in how we understood my brother as we recognized his:
- Emotional connect. A connect he would show in the most subtle ways. It ranged from showing care when I was sick to laughing to our jokes (especially sarcastic humor!). As his vocabulary grew, he even shared how he “missed” a friend who was absent from school. So strong was the emotional connect of my brother, that he could even sense the tone of how we were speaking — whether it was sadness, anger, humor, or sarcasm. He was actually quite connected with his close ones, though he might not be able to recall the exact word he wants to say all the time.
- Diverse skills and capabilities, from teaching himself to play the piano to doing quick mental math to negotiate how much candy he should get to mastering a computer game in minutes. If he found it interesting, if he found it was relevant, if he found it practical – my brother would focus to learn and do it. It was difficult for my brother to process the world around him, but there was some things that definitely motivated him to overcome these challenges and focus.
- Ability to learn from his environment. While we thought my brother was in his own world, there was so much he had learned from his environment. He had learned sight words to express what he wanted just by observation. He had learned the tunes of songs he had heard just by listening. Keenly observing high school peers he sat silently in science class and took notes.
[Read more on the ten discoveries that made a big difference in our understanding of my brother]
These discoveries made us realize that just because my brother doesn’t say or show it, it does not mean that he does not understand or does not have that capability. At times, it may be that I do not understand his “language”. At times, he may not understand my “language” or show he can understand quickly and on demand.
That is the key challenge my brother faces. While he has all these capabilities and emotions, he struggles with many things we take for granted: dealing with the noises, sights, and sounds in the environment, processing languages, retrieving words, and expressing himself. [Read more here]
Imagine the frustration- of having so many capabilities and things to say and not knowing how to say it (especially on demand and at the right moment)- as if there is a language gap. To me, this dichotomy is one of the key challenges for my brother. And I know it is not easy for my brother — if anything, it is very frustrating.
This frustration has led my brother to develop another language of expression — filled with anxiety, anger, and irritation. And it became important that we decode an approach to bridge the gap between his world and ours.
Hence, over the years, we have developed an emerging approach that we have begun applying at home— almost like another language — that has helped us create a supportive environment for my brother and help him express himself. The approach offers a shift from traditional approaches across key tenets:
- Moving from an environment of correction / re-direction to providing a positive emotional environment: focused on what “he can do”, acknowledging and empathizing with his emotions, and respecting him
- Moving from telling him to do things to actually explaining why he should do them; there are things that we take for granted, that may not be as obvious for my brother; explaining makes things more explicit for my brother
- Moving from standard worksheets/ learning methods to developing customized tools and approaches that breakdown concepts in the way my brother learns and processes information
- Moving from rote learning to teaching concepts in action; focusing on what is relevant and practical for him. Things are difficult for him to process. It is important to focus on what matters.
Through this website, we are sharing our journey so far … we have not reached a destination yet. There are still challenges but we feel we are headed in the right direction. While I know each experience with Autism is distinct, we hope there may be elements of our learnings so far that are helpful in your own journeys decoding Autism.
The vision of this website is to harness our collective experiences with Autism to help discuss and brainstorm solutions for how we can better understand and decode autism. There is no “one size fits all” solution to Autism — and hence the more experiences we can bring together the more effective it will be.
Please join us in this journey:
- Explore our emerging approach, blog, and tools and resources
- Participate in the “Decode Lab”: a platform to jointly brainstorm and share perspectives on the approach
- Contribute to the Vision for the future
- Contact us with any questions and comments
- Join us in our journey
We look forward to this journey of Decoding Autism with all of you!
