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

#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.

I Want To Be An Approachable #Autism (self) Advocate

A few weeks ago I made a mention on my personal page about some comments I had heard recently from Bean's attendant care worker, and a few other people that were less than politically correct. Some of the comments were downright insensitive, and misinformed. My special needs community friends on FB were appalled. I was as well, but I saved that reaction for behind the scenes.

Why?

You're Autistic?! No Way!

I don't always tell others about my AS diagnosis, whether I know them well, or not.  Sometimes I do, but with quiet trepidation as I await the response. I will not lie. The response determines how likely I might be in future  to disclose my diagnosis. I always blurt it out quickly, through the sound of my pulse rushing in my ears making me almost anxiously deaf to the world for that moment I await the response from the other party. I lean in, hoping for some sign of acceptance... I almost always get one of two responses.

The most common- "I would never

Changing Perspectives #ThisIsAutism

I must admit, I did not fully read Suzanne Wright's Call To Action until this morning. I am familiar with Autism Speaks, and their agenda, so I had a pretty good idea what it would contain. I wish I could say I was shocked, dismayed, or even surprised at what I read when I took the time to fully consider the entire letter, and what it meant, but I wasn't.

I would like to counter Autism Speak's ideas that autism is somehow new, and somehow only affecting children. I would like to somehow understand how an organization could have so much access to autistic advocates, yet deny those people a say in advocating, and speaking on behalf of a 'disorder' they're diagnosed with. I would like to ask them why they alienate us. Why they scream for support from the government, but offer not a dime to adults on the spectrum needing support today.

But, I won't.

I Wish The World Had a Pause Button

Ever since I was a child I can remember that I can go from being completely happy, and okay with my current situation, to completely overwhelmed, and confused. When this happens the only thought in my mind is to run away.   I need the world to stop, so I can process it. I need people to stop talking, stop moving, stop everything. I need time to pause, so I can recover my wits. Obviously, the problem with this is that the world doesn't stop just because I'd like it to. I wish I could hit pause. I wish the world had a pause button.

Bigotry and #Autism Advocacy- The (undefined) line we all think we avoid crossing

If you follow me on my page, or on this blog you will know that I am passionate about autism, civil rights, and just plain advocating for the equality for all, because to me, everyone matters. I tend to limit these views to my own space, because I try to not go around imposing my opinions on others. I am low drama, because  my brain doesn't really understand it very well. I freely admit this is a limitation that Asperger's has enabled within me. It's not necessarily a bad one, either. My self worth is not dependent on who likes me, who agrees with me, or any kind of group collaboration. One saying that I have had since I was in my teens before I have ever knew about AS is "I do what I do, and you do what you do." What I have always meant by this is that I am who I am, and I'm okay with my choices. As long as you're doing what makes you happy, and aren't hurting anyone, your choices aren't any of my business. My ability to remain neutral is usually logically intact before, during, and after any disagreement with a person.

I do however, occasionally get into disagreements with others about various things. This isn't hard in the autism community where the atmosphere is generally tense between opposing beliefs. What I have found that is different for me than others is how I am often treated differently due to my neurological status, if said status is disclosed to the other party.  In other words, if I am known to be autistic while I debate share my thoughts, and refuse to admit that I think I am wrong I am often accused of not understanding the social situation, or the proper social protocol.  They may insinuate that I was not sufficiently stocked with the right social stories as a child, because obviously I don't understand their point of view. I was not taught manners. Or, maybe I am just too rigid in my thinking.

What's an Obstinate Aspie To Do On Autism Awareness Day?

Today is Autism Awareness Day.

I posted this on my personal page in regards to Autism Awareness month:

"April is Autism Awareness month. I usually join in, but this year I don't think I have it in me, unless I am to somehow gain some momentum outside of dealing the pressure that I am under from so many areas, mostly the school who is autism unaware, and fine with that unawareness. Willful ignorance is probably a better description. I am done with what seems to be me preaching to the choir, because they're the only ones listening anyway. If you want to know more about autism, and are not already on my autism page, or aware of my blog, let me know. I can direct you to all the information you could ever want to know, but I'm done spinning my wheels trying to make others get it, that never will. I'm too busy making sure my boys have a better chance at life than the autistics that went before them. I don't have time for the petty ignorance of who has the right to say what, or wearing certain colors for this or that. It's time to move up and onward. Only action oriented advocacy can do that, and my actions start at home with my family. My sons, especially Bubby, need my focus to be on them, and their rights. Making sure they are taken care of, has a fair education, and is treated with respect is my contribution to the autism community this year."

This is pretty self-explanatory in what I mean, and why. But, there is another reason why I don't participate in big organized events. One more silly, and one that I don't think I understand, but it's a tightly held character trait, nonetheless.

I'm completely oppositional.

New Places &Trying New Things

I thought this might be a good day to bring back some more journal type of blogging. Sometimes, it's nice to blog in a more structured form where there is a clear beginning, middle, and end to the whole piece.  Those kinds are like essays, and they have their place in the blogging world, but then there's something to be said for the freestyle of writing that flows naturally from the writer as if you were having a conversation with them. It's a really authentic way to write, because readers can really feel they know you, and are a part of your everyday life, whereas essays type writing, while passionate, can be a bit colder. Soapbox persuasion is meant to express a particular point of view with a means to explain, or persuade, rather than to just discuss.

So, to kick off autism awareness month I am here to just write about my experiences. I may get an idea in my head later on about a good topic to write about, but right now I am too busy living my life, and doing what I do to really do much more.  Autism awareness is something I engulf myself in everyday.  April is not different in that for me. My page, this blog, and my advocacy at my boy's schools is what I do for autism awareness everyday.  Sharing some social media photos, and wearing blue is not autism awareness to me.  It does not do anything to change the current status of how autism is viewed.

So, here we go... Today, we have an appointment with