Finding Resources: Part Two | Organization for Autism Research

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This is the second part to Kat Albee’s blog post Finding Resources. In the conclusion of her blog series, Kat includes additional guidance for how those in the autism community can continue to advocate for themselves.

 

Using The Internet

If you are reading this, then you have an advantage unique in all of human history. No, it’s definitely not my writing! You have the internet—an amalgam of knowledge from across continents, spanning recorded history. If you have a smart device, then the entire contents of the Library of Alexandria would fit comfortably within it, along with every composition ever written by Mozart and Beethoven, with room to spare.

The internet is not just a static record of history, however. It is a living community, with information constantly being added, discussions constantly being had, and free for anyone to use to share their thoughts.

Unfortunately, we now know that this is one of the dangers of the internet as well. So before taking an online resource at face value, ask yourself these three questions:

1) Is this resource qualified to talk about the subject at hand?

Now, I’m not suggesting that someone needs a PhD in neuroscience to have the right to post on the internet. Accessibility is one of the beauties of the internet age! Rather, ask yourself if the author of a web page really knows of what they speak. Are they well-known in the autism community, or are they an anonymous commenter on YouTube?

A self-declared “autism parent” likely does not know what it is like to have autism themselves—just as I, a childless autistic blogger, do not know the best way to parent a child with autism. My role is only to provide an inside view. Likewise, do not get lists of symptoms off a shopping website, do not take medical advice from religious organizations, and do not try to get emotional support from medical journals.

Believe me, that last one really doesn’t work!

2) What does the author have to gain?

I’ve seen too many people stirring up fear and false hopes in the name of selling a miracle treatment. Before becoming invested in the content of the site, scroll all the way down. If they end a lengthy report with an offer to sell expensive supplements or technology, you’re probably best off ignoring the “information” that site presents.

3) Does this pass a sanity check?

Recently, my inbox brought me a horrible story: Parents have been giving their children industrial bleach, orally or in the form of an enema, to try to “cure” their children of autism. The truth is actually more bizarre and complicated than the sound bite makes it sound. Parents aren’t going out and buying Clorox for this purpose; rather, a para-religious organization had been selling a harmless-looking “Miracle Mineral Solution” which, when combined with fruit juice as the bottle suggests, turns into bleach. At least one fatality and many injuries are associated with this. The FDA had issued a warning against the product as early as 2010, meaning that a quick Google search focusing on serious outlets could conceivably have prevented parents from harming their children.

The origin of this bizarre “cure”? Jim Humble, the pastor of the Genesis II Church, who once claimed to be a billion-year-old God from the galaxy Andromeda.

If you think that you could never fall for something like that, think again. Even the smartest people can be duped by someone offering hope in a desperate situation, and our brains have ways of making us believe things even in the face of overwhelming evidence to the contrary. Just look up “confirmation bias” if you don’t believe me! This is why it is so important to keep your wits about you as your surf the web.

 

Finding the Closest Thing

A couple of years ago, my family and I were moving to Hudson, a riverside community in the far west of Wisconsin. Since I cannot drive, I needed to find transportation services.

I checked out Hudson’s local government website and was dismayed to find that there was no public transportation service to Hudson. There was, however, a volunteer transportation service for “seniors or adults with disabilities.”

I got hooked up with that service, run by the Center for Independent Living (CIL), and now whenever I need to travel to, from, or within Hudson, I use CIL. I have a copay of $5 for a short trip and $10 for a longer or round-trip. While the cost isn’t ideal for a student like me, it is by far the most reliable way for me to get to appointments.

I often find that when something specific to me isn’t available, I look for services meant for developmentally disabled adults, or people with disabilities in general. Sometimes, it may even be helpful to look for resources which are meant for someone else entirely. For example, if you have a child with multiple disabilities, you may want to look at advice meant for special ed teachers or elder care facilities. Just because something wasn’t tailored for you doesn’t mean it won’t fit.


 

About the Author

KatAlbeeProfileKatherine “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.

 


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