Tuesday, April 29, 2014

Give Me a Sign- Expressions of PosAutivity: #AutismPositivity2014

I have been thinking about doing a Autism Positivity blog post entry  for a few days. I kept drawing a blank on what to write about, so I was unsure if I would participate. Then, I read last night that this year's suggested theme is communication, and expression. This new info reminded me of a post that I have been thinking about writing for awhile. I hesitated, because I don't know if many will think it's positive. I don't know how it will be received by others in the autism community, especially those that don't typically follow my blog who don't know our story. Then, I remembered how much I tend to care about people who don't know my story who want to lend judgment on how I should express myself. I have no cares to give about those opinions. While speaking about the themes being self expression,and communication style of people with autism I can safely say this blog is how I express so much of my inner self. The people that follow me here know me more authentically than anyone I know in real life who has never read my writing (save maybe a couple people), so I do myself a disservice when I censor my writing to fit what what I think others want to read.

As most of you know I have a 10 year old profoundly autistic son named Beans. He is nonverbal. For years, the school, and private speech tried to teach him to use Picture Communication Symbols, or PECs for short. We tried the symbols, the actual pictures, and even objects. We tried devices, and differing methods all the while Beans became more, and more irate while virtually not improving in any of the methods, at all. As we all know, behavior is communication. It didn't take me very long to decipher what he was upset about. Life is confusing, and overwhelming for him as it is, but imagine being asked to participate in an activity for 7 years that made no sense to you, everyday. You were asked to point at random pictures, and not allowed to do anything until you did. This activity would follow you from eating to playing. Always that book of pictures. I often wondered what they looked like to him. Were they just colorful pieces of laminated paper? How did he feel when he saw that book come out day after day? He melted down more frequently, and his communication had not improved any measurable amount in that seven years. We had some of the best service providers in the country teaching him to use the book in private speech, and public school. No, to little improvement was a clear indication this was not working for him. The meltdowns from frustration was a clear sign to me that he does not learn this way.

I didn't know the struggle that lay ahead of me in getting professionals on board to use another method. It was such a shocking, and sobering experience to me to be completely shot down when

Tuesday, April 22, 2014

Does Your Scalp Tingle Sometimes? Unraveling the ASMR mystery.

A few months ago I shared a link on my Facebook page about that special tingly feeling that one gets at certain times.  It usually starts in the scalp, and moves down the body in response to specific stimuli. It's extremely pleasant. It reminds me of the warm, happy feeling I get from muscle relaxers times 100.  Many of my friends responded to the post with a "I have that, too!" Most didn't know that it had a name. In fact it does- Autonomous Sensory Meridian Response I didn't think much of it at the time. I did put it on my mental list of 'things to research later' which is already years long.

Fast forward to a couple months ago when I was composing the blog post about General Anxiety Disorder. One of the things that I listed to help was meditation videos. I went to youtube to find some of the best examples of these that I could find for me readers, and BAM. I stumbled upon ASMR videos. This happy sensation that I get when I watch certain people talk, or hear certain noises, and most especially when I get a massage was easily accessible via hundreds (if not thousands) of videos online.

There is not much known about ASMR, and why it affects people the way it does. Even more surprising than that is not everybody can feel it. I always assumed everyone was able to have that sensation just like I was. There is still a lot of research being done about ASMR. Some say they're still trying to validate it, because scientifically it's still not really been verified. Much like synesthesia was years ago, there are still some people that deny it exists. I really am not sure how one verifies a feeling. If a ton of people report a physical sensation then I would have to say it does indeed exist. We're not assuming paranormal explanations for this phenomenon. It is simply like being ticklish. Either you are, or you're not. Either your nervous system is capable of this phenomenon, or it isn't. There is nothing hokey about it.

So what is ASMR specifically?

Wednesday, April 16, 2014

The Miracle That Didn't Happen

Flipping through my FB, and Twitter feed I can see an array of autism related articles, and blogs. Just looking at their titles one can see a gleam of inspiration, and awe-ness that many of the pieces contain within. The feelings of warmth, and love. I think those pieces have their place, but sometimes the sweetness gets to be too much. I often feel like I am watching the end of a South Park episode where one of the characters always turns, and says "You know what? I learned something today." then continues to speak about the important life lesson they learned in that episode.

Why does that bother me? The short answer to that question is 'bother' would be a strong word. I certainly don't feel like I get to tell other people what they should write about. I'm not about to censor other people's words, because my experiences don't match theirs.

It just feels... awkward, or maybe too artificial in some ways to always be a parent of kids on the spectrum whose experiences aren't nearly that enlightened.

Tuesday, April 1, 2014

#Autism Awareness Month- Love it or Loathe it?

Today kicks of the start off Autism Awareness Month. Began by the Autism Society in the early 70's to address the need for concern  and awareness of autism nationwide. Autism Awareness Month is a month to educate, connect, and advocate for the needs of those on the autism spectrum. In 1984 World Autism Awareness Day was adopted by congress, and officially  by the UN in 2007 as a day of autism awareness for the entire world to observe every year on April 2nd.

Today, the world indeed seems to be aware of autism. We have certainly come a long way from the early years of connecting with others in the late 60's when the Autism Society was formed. We now have not just national attention, but international attention focused on the issue of autism. With all of that attention focused from so many different backgrounds of people conflicts are bound to arise. The autism community is not immune to human differences of opinion that can bring even the most well meaning ideas to a screeching halt. Some want awareness for a cure, others to raise money for prevention, and research. Others just simply want their neighbors to know that their child is a unique individual with a happy future, and that acceptance is paramount to any other reasons for the campaign. Still, many others feel the entire campaign overlooks the humanity of the people involved, and instead portrays autistics as statistics, instead of real living people. Many point to the fact that adults are almost totally overlooked as every campaign slogan, and graphic speaks only about children.

Many of us in the autism community have conflicted feelings about Autism Awareness Month. I have seen some express that they aren't looking forward to it at all. Is that how the majority feels? Would most just like to skip it? If so, how has this grand intention of autism awareness turned so sour that even those that this month is about don't want to participate?  I wanted to hear from those in the autism community about how they feel about Autism Awareness month. Below is a collection of direct quotes from a few people within the autism community about the subject. Please add yours to the comments section.