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.
The opinions expressed here by others are not necessarily shared by me.
Submitted by Karen about her son Louie.
" I am the mother of a 12 year old son who has autism. My son wants people to know that he has autism and that he sometimes needs extra help. We put out a lawn sign for all of April that says, "We love someone with autism." This has opened up discussions with our neighbors, most of whom don't know how to ask about my son. We also use blue light bulbs on the front of the house, not because we support Autism Speaks, but because it's something that our neighbors can understand. My son has written to President Obama, several Catholic bishops and Pope Francis about autism. Last year, he requested a special Mass at church to pray for everyone who has autism as well as their families (every Catholic Mass is offered for a specific intention, it can be almost anything as long as it is for something positive), and he served as an altar boy at that Mass on April 2, World Autism Awareness Day. I think most people are afraid to say the word "autism," and most are afraid to ask about it, so just making the word visible can help to increase the level of general compassion."
Submitted by Wendy from Bugaboo's Treasures:
"This may not be a popular opinion. But here it goes. I am not looking forward to April. I'm just not. All the news broadcasts, studies, tv shows, etc. I am all for awareness and acceptance...but so much of the info we are going to be forced to digest will be spoken by people without a clue about our everyday lives. Fear is spread along with the awareness and it hurts. For me, who lives with my beautiful Autistic children everyday and has gone through over 7 years of this....I would prefer to just jump into May and forgo April all together."
Submitted by Tsara Shelton From Autism Answers:
"As a PR person (I basically pitch shows and news outlets with ideas for segments and stories) Autism Awareness Month is kind of exciting for me. Suddenly my topic is "timely" and producers or reporters might actually open my emails.
However, I've been doing this job for about four years now and it's become disheartening. If my story idea isn't sad--doesn't evoke pity--or isn't cookie cutter inspirational (which usually includes evoking a little pity) they are afraid to take my bait. The media claims to want controversy, but only if it's not risky. Only if it's already got some big corporation or well known name backing it up. But corporations and systems tend to poison any message and so listening to the not-so-famous, the hands on specialists and parents, both on and off the autism spectrum, is exactly what's needed in the media. And not causes or semantics arguments, but ideas and perspective sharing.
Admittedly, I'm so busy pushing my own agenda in April there isn't much room in my brain to get to know the agendas of others--listening and learning is my habit every other month--but I see enough to know I'm not the only one feeling let down in April. I'm also confident, though, that I won't stop trying just because it's hard. In truth, I kind of know it's needed especially when it's hard."
Submitted by Rainbow from purpleaspie.WordPress.com
"I am an autistic adult who dreads autism awareness month. I feel that we do not need "awareness." Everyone is aware of autism. We need autism education and autism acceptance. I know that I will be reading "light it up blue" posts all over Facebook from people who think that we need to be cured. There will be scare-mongering stories about how autism is an evil scary thing that destroys families and ruins marriages. Most of all, the news stories will focus on children, and adults will be ignored once again, as we always are. "
Submitted by Brandon:
"As an autistic adult who is newly diagnosed I see so much neglect not only from NTs but from within, to our autistic culture, traditions and rituals and honouring our own unique communication style or language. I fell that almost all who are involved with the movement have a bad habit of downshifting stigma to those whom they perceive to be lower on the autistic spectrum or in the case of NTs down to those whom are perceived to be suffering less. The science community downshifts stigma by looking for a cure rather than also seeking ways to improve our quality of life, health and helping us be accepted for the group of people that we are."
Submitted by Angel from Mind Retrofit
"Years ago, I had feelings of positivity and happiness upon discovering Autism Awareness month was in April, a colorful and bright month with many positive associations and happy sensory connections. I was excited and hopeful to share our experiences, and anticipated others longing to learn about Autism families and seeking ways to help. Although there have been great moments, Autism Awareness month brings with it division, distorted communication, group think, and lack of empathy.
I have seen people accept, share, and embrace their Autism. I have witnessed parents speak up about overt generalization of children with Autism, and Autistics make it clear that the others, including the medical community, don't speak for them. A greater number of people seek to understand Autistics, try to help them communicate, participate, and be beacons of light for the more misunderstood aspects of autism.
In the midst of all of the good, the bad, and the ugly I have transformed as well. Though Autism Awareness month still drudges up negative feelings, anxiety, fears, sadness, anger, and frustrations, my heart is more open and sympathetic to people’s experiences. Every year, I hope for something better to come out of April, and so far, each year surprises me with all the positive that does come from it."
Submitted by Kelly J From One Quarter Mama
"I don't like it because I don't like the association it stems from. I would prefer "Acceptance" over "Awareness" - I'm pretty sure we're all aware now. Let's accept each other for who we are! Also, it puts me in an awkward situation as a parent because my son is encouraged to celebrate "Light It Up Blue" at school and I'm against it. I want him to have fun with his classmates though and he is too young to understand the politics."
Submitted by Carly:
"I like Autism Awareness month because it helps others get to understand that we aren't robots we are just like everybody else with a lot of EXTRA!!!!! It's like being an ice cream shake and having the rainbow sprinkles and cherry on top too."