I know I stated in my intro that I’m not all that serious, which is absolutely true, but something has been bothering me these past few weeks leading up to this year’s Autism Awareness Month. The apparent divide caused by this yearly month of Awareness has me more confused now than ever and I thought that we were one of the few communities that didn’t have such rifts, but as I will explain further on, we do….and I find that revelation to be quite disheartening.
But yeah…Autism vs. Autism?
You read that correctly, it isn’t a typo, misprint, some made for tv battle on some late night show no one has ever heard of that airs on a channel only three people in the world have. This is about the divide within the Autism community that surrounds specific issues, such as functioning levels, neurotypical vs. those affected by ASD, those with children with ASD vs. those with adults with ASD, Camp I HATE Autism Speaks vs. Camp I’m Good With Autism Speaks…oh, I’m going to need a pack of Red Bull and some Craisins if I’m going to continue on with this list, that’s an all-nighter. Right now, being that it is now Autism Awareness Month, I want to focus on the “Awareness” versus “Acceptance” divide.
First off, I am going to state that I had no such idea such a divide existed until I ventured out into the world of social media support groups (I will explain the pros and cons of the online support group in another post). There appears to be three camps within the ASD community on this issue. Team Awareness, Team Acceptance, and Team Acceptance and Acceptance….meh, guess I could add a fourth, Team No Damns Given. Before I get into what team I am on and support, it is imperative that we discuss what each side stands for.
The Awareness camp supports what the month of Awareness is designed to promote, increased general awareness that will lead to earlier diagnoses, the development of more effective treatments and/or interventions, and better access to services for those affected by Autism. This camp feels that the general public is not fully aware of what Autism is, how it affects those who have it, and that it is important to advocate for services that better help those with ASD. The more the general public knows about Autism and how it affects our loved ones, the better we are to advocate for more resources, better services, treatments, etc. The more someone knows about Autism, the more likely they are to treat them better, to accommodate for their needs, and are more apt to teach others as well.
Team Acceptance feels that we are past awareness. That Autism is a well-known developmental disorder that damn near everybody and their mama has heard about and if they haven’t heard about it it’s because they are a) living it themselves and/or someone they love is affected, so therefore no need for 3rd party teaching, or b) not living at all (RIParadise). They want those with Autism to be accepted as they are, to be loved as they are, and treated with dignity and respect. “What’s lighting it up blue gonna do if kids keep lighting up my son red from punches to his face?” Underdamnstandable. They feel that awareness brings out the doom and gloom of Autism, those that are higher functioning and able to self-advocate, feel as though they aren’t loved enough and that the world doesn’t see them as people. Acceptance advocates feel as though the Awareness peeps focus far too much on the negative and are doing a disservice to the their loved ones and the community as a whole.
Team AA (Awareness and Acceptance) is pretty much self-explanatory. Members on this side of the issue find both awareness and acceptance equally important, and you can’t really have one without the other so to speak.
Team No Damns Given, again, self-explanatory and didn’t really need a section but I’m equal opportunity, everyone deserves a chance to shine and be recognized. This group of individuals simply doesn’t give a damn about Awareness, Acceptance, whatever. Rare to find one, like a Walkman, but they are out there.
This mama rides the Team AA train. I support both concepts and will forever intend to do so. I cannot see the benefit of preferring Acceptance over Awareness and vice versa. While Autism may be a pretty well-known disorder, it’s only really known by “name” to many. So many don’t know what it is, how it affects the individuals that have it, etc. There was a study I read the other day that had close to 40% thinking that those with Autism have a special gift. So many think my kids are incapable of showing love, or wanting friends. So many don’t know that Autism exists on a spectrum. They don’t understand how my youngest who is higher functioning than my oldest (who is severe) has Autism There was a cashier who upon learning that my son had Autism, assumed that he was going to grow up to be Adam Lanza and that I was going to have to “watch him.” This line of thinking is detrimental to those living with Autism in my opinion, and I think that continued awareness can lead to a better understanding, which will lead to acceptance. People have a hard time accepting what they don’t fully understand. How will you expect them to understand when so many don’t have a basic idea of what Autism actually is? That whole “I’m aware everyday” line of thinking the Acceptance camp uses as a means to dismiss the promotion of awareness is erroneous in my opinion. Ok, you’re aware everyday…so am I, now what? Doesn’t mean my neighbor is, my family, or the cashier at the grocery store who said my kid was going to grow up to be Adam Lanza. She fears and misunderstands a child she doesn’t know because she doesn’t actually know what Autism IS. You’re getting angry looks and comments about your child and yourself when the meltdowns occur because they don’t understand what a meltdown is. That it’s not bad parenting. The cashier’s comments presented a teachable moment…for her. She is not going to accept my child or anyone else with Autism until she knows better, until she’s made more aware of what Autism is.
Sauce Test (Social Experiment): Ask a random stranger what Autism is, what they actually know about it, and how it affects the person that has it. I have found that for every five I asked, only one really knew.
I am of the belief that acceptance follows better understanding, a result of being more aware. I don’t think as a community we have reached the level of public awareness that allows for acceptance that no longer requires awareness. This is a forever concept. The need for awareness will never go away, in my opinion. I just cannot see the road to acceptance being paved without awareness. Each one, teach one.
Extra Glaze: I just want to say that it has saddened me to hear of such a divide within our community. To hear of so many other divides. I may go into detail on the others in other posts, I have yet to decide. I want this community to come together and support one another, not tear each other down. Hear each other out, respect each other and respectfully disagree. The things I have read from both sides of this issue to the other have been absolutely awful. I’ve grown frustrated myself, let anger get the best of me and while I did not lash out at anyone specific directly, I did vent angrily on my own personal facebook page, as I am sure many of you have done as well. I was not only disappointed in the ASD community, but in myself as well. We’ve got to do better. We just have to. All of us.