Self-advocate Kat Albee highlights ways in which those on the spectrum can be resourceful and hold onto a positive outlook in a variety of real-world situations. This is Part One of her post. Part Two will be featured in next week’s blog.
Changing Your Mindset
I recently read a memoir called Growing Up Yanomamo. It’s about missionaries to a people group, the Yanomamo, who live in a remote part of the Amazon Rainforest, so isolated that, for hundreds of years, they believed they were the only people in the world!
One thing that continually struck me was the Yanomamo’s resourcefulness. In the absence of modern tools, information technology, or medicine, Yanomamo children learn early on how to hunt, fish, cook over a fire, erect shelters, weave baskets, and even how to remedy common illnesses and injuries.
One of the most important impacts missionaries have had in the lives of the Yanomamo has been aviation programs. Early deaths by disease or injury are tragically common in the jungle, and small airplanes can act as ambulances, taking the needy to civilization with speed.
When you or a loved one develops or is diagnosed with a disorder, help can sometimes feel a million miles away. But rarely is this the reality of the situation. Whether you are waiting for an airplane to land on the Orinoco River, performing surgery on yourself in the Antarctic, or scouring the internet for information about a rare disease, we humans are born survivors. We all have the capacity to be (or become) resourceful.
In generations past, there was a severe stigma attached to any kind of disability. From World War I through the Cold War, belonging in society meant participating in some patriotic effort, either as a soldier or as a worker on the homefront. In many people’s minds, it was unthinkable to be disabled and therefore unable to participate on equal footing with others. Many disabled people languished in isolation—homebound, neglected, or needlessly institutionalized.
It’s easy to remain stuck in that way of thinking. That is why I say that the first step to resourcefulness is to believe that you have the right to a higher quality of life. Demand better for yourself.
Using Your Location
Having given all of these gloom-and-doom warnings about the internet, there are plenty of legitimate and helpful sources to find!
Google and similar search engines all use “keywords” to find information, and one of the most powerful keywords can be the place where you live! Let’s say that you live in Jacksonville, Florida, zip code 32257.
Searching Google for “autism 32257” brings me to the University of Florida’s CARD (Center for Autism & Related Disabilities), which provides free support for autistic people, including those with multiple disabilities or sensory impairments. The nearby HEAL (Helping Enrich Autistic Lives) offers a large directory of resources from adult services to vocational rehab. There are also grants, training for educators, communication technology assistance, a directory of doctors, a private non-profit school, Applied Behavior Analysis, diagnostic evaluations, and more!
To cover all possible bases, I would also recommend searching for your town, or nearby cities if you live in a rural area. A search for “autism Jacksonville FL” reveals 29 additional schools specifically for kids with autism, as well as a nonprofit offering advocacy, training, autism-friendly business consulting, pop-up sensory room rentals, and sensory bags.
If you’re pressed for cash, look for resources on your local government website. Some will have programs aimed at seniors, but which are also appropriate for people with any kind of disability. Transportation and respite care are among the most common services I’ve seen offered.
Try, try again!
Sometimes it takes multiple attempts to find the right resource. A Google search for “autism Jacksonville, FL” turns up approximately 232,000 results. While I hope no one is forced to do this, I would suggest that one’s quality of life would be worth exploring each of those thousands of results for all it had to offer.
By far the best thing you can do to find resources is to expand your social network. Join the local Autism Society, listen to autistic people’s voices, and talk to people who have nothing to sell. Keep an open mind, and an even more open heart.
About the Author
Katherine “Kat” Albee is an undergraduate at the University of Northwestern in St. Paul, Minnesota, where she studies psychology. She was diagnosed with autism spectrum disorder at the age of 19. In her spare time, Kat likes to walk or bike through the community, read the latest research, or do anything crafty. She is also fond of neuroscience, parrots, and speculative fiction.