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.

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."


  1. I have mixed feelings about April. I will be participating through my anonymous blog by posting information. On my facebook page, it gives me the opportunity to further educate family and friends. But, it also makes me sick to my stomach when I post. Will I get attacked by someone. My blog is primarily from the perspective of a mom and written for parents. A lot of them are written just so parents can see that someone else can understand where they are coming from or so those parents can the share it with other family and friends to help them understand more about their child. I was once attacked by a young adult with autism that did not care about my perspective at all and they kept attacking me until I had to block them. It was so hateful and uncalled for. I have seen more and more division online and that is the part I dread. I love the supportive and educational posts I see during April. I dread seeing the divisive and angry posts. I wish everyone could come together during the month and put aside their divisions and celebrate how much we love and accept those with autism in our families and increase the access to support.

    1. I can see both sides to that. As much as I can almost feel the angry autists gathering their pitchforks, and torches as they make their way over here I have to admit that the young angry ones are hard to deal with. They have a point, but the way they express it is poor. They don't go into it as a respectful discussion, but more as a see it my way or I will continue to harass you until you do mentality. It sometimes is the whole black and white thing we can have issues with. I know I did years ago when I was young.

      However, and this is a BIG however.... we can't just sit back and wait for our dignity, and rights be handed to us. We have divisions with some of the issues because it violates our rights as people. No one is just gonna hand that power over to us, so I do see where at times there is a need to dig in, and stand one's ground. There's shades of gray moving up to it, though. Going into a discussion guns a blazing isn't going to necessarily get us what we're looking for, but neither is passivity. For instance, I saw an autistic adult post that she was going to unfriend everyone who had liked a certain page. While I also agree this page is terrible, and am leery of anyone who supports this organization I don't feel going that route is going to change a thing in our favor. I'd rather those people stick around, and hear what I have to say. Maybe, I might get them to understand why autistics typically find that kind of awareness offensive, but they need an opportunity to learn, and not be bullied into it.

      Anyway, this comment has gotten longer than I intended for it to! Thanks for reading, and commenting!

  2. I have mixed feelings about this month. On one hand it is great that society learns about this illness and about the scientific truths about it; on the other hand I get to look forward to a hole bunch of people without a scientific background telling me to avoid gluten, milk, and immunizations. While I think it is important for the word to be spread I think it is more important to show in the news media the more severely impacted. To have a whole bunch of interviews of highly functioning aspies talking normally and expressing clearly some issues they face is no where near close to the reality that some families face with severely autistic children. Don't keep showing the video of the guy who can fly over new york city and then draw the city from memory if someone how autism makes us X men. I think it is silly when people say "I wouldn't mind being autistic if I could draw like that."

    1. I agree, well not so much about the gluten thing as they "establishment" has actually finally done studies that show it is an issue for many kiddos on the spectrum and it worked for us but....Even though my son is on the high functioning side, I know families with non verbal kids and they don't show those stories. They need to stop with all the inspirational stories and show how difficult it can be for some families. Even a high functioning kid is not a walk in the park no matter how much you love and accept them. I have had people say to me that most people with autism are really smart or geniuses. The truth is that half have intellectual disabilities and of the other half very few are "savants." They need to show the difficulties along with the joy and the feel good stories.

    2. I don't get a lot of comments about gluten. I do still see a concerning amount of comments about vaccines, and such, though. That is one of the issues I won't budge on, and will get pretty irritable about, because it really is a matter of life, and death for some people. Not getting vaccinated has very serious consequences.

      I think you all already know I hate inspirational media. If you do a search of my blog you will see the posts I have written about it, so I won't go too much into detail repeating myself here.

      I have an issue with all 'token' type of autistics, and the way society uses them. Even savants tend to need a great deal of support to make it through each day. We can't be all rosie all the time about autism, because it overlooks some very real challenges people on the spectrum face, but we also have to carefully avoid the tragedy model. Autism just is. It's not good, and it's not bad. It's just different, but we must have the right supports in place to accommodate, and understand autistics.

  3. I have had an Autism Spectrum Disorder (it's somewhat obscure - PDD-NOS) for my whole life, but wasn't diagnosed until about 10 years ago and just found out recently about Autism Awareness month. I haven't had a chance to form an opinion about it, but I do have some opinions about some other things. The first is that as a PERSON with Autism, I don't like being referred to as an autistic. I am also an educator, and "people first" language was continually stressed in classes for a reason. I know it takes a few more words, but I am a person first. I may have a few more quirks than the "typically developing" person, but I am still a person, not a disorder. I often get very upset when people refer to me as an "autistic" or "asthmatic" or "LD" or any other label instead of as a person. While my disorders affect how I relate to the world around me they do not define who I am as a person. Second, I completely agree that there are a huge lack of resources and "awareness" out there about adults with autism. Though I have had my disorder my entire life, I was misdiagnosed several times as a child and was not properly diagnosed until I was in a special needs high school. Since graduating, I have had a terrible time trying to get services beyond the little offered to me at my college. I would like to be able to move out of my parent's house, but need just a little outside assistance. I can't afford any options available to me on my own, and the few agencies that do offer coverage for services like that for adults often don't cover me because I don't have "true autism" instead of covering the entire spectrum. I won't give you my whole frustrating story of dealing with our local regional center trying to get services for me. Needless to say, until I can find a job that pays well enough or a guy I like well enough to marry who's also willing to offer the support I need, I will be living with my parents.

    1. Firstly, I apologize for offending you. I tend to dislike person first language, but I'm not one to feel passionate about either side, really. I prefer being called autistic, or person on the spectrum, and dislike person with autism, or aspie, but only to a small degree.

      I much rather focus my energy on the topics you describe, which is how adults on the spectrum are not well considered in society. It's all about kids, ABA and therapy. Not much is ever talked about after we establish that the older child/teen/adult on the spectrum has outgrown much of the therapies, and current services, which is mostly school. Many of us need life skills, and the adult version of OT to be able to live independently. I don't know that this is as prevalent in other places, like the UK. It has been brought to my attention that the US is very poor in the acceptance area of autism.

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  5. It was nice reading about the varied opinions and perspectives regarding autism awareness month. I have to agree with those who are not in a particular favor of the occasion. The world should not stop at being aware of the disorder, the world needs to be educated as well. Autism awareness month isn't all that bad, but surely we can do a lot better than just raising awareness, right? In any case, thank you for sharing that with us! All the best! :)

    Sabrina Craig @ Medical Attorney NY

    1. Thanks for reading, and commenting! Yes, I hope this month brings with it more than just awareness, but also acceptance, and appreciation.Surely most of us can think of some things about autism that can be appreciated?


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