Why I’ve lost faith in #Autism Awareness Month and what I’m doing about it

As Autism Awareness Month creeps closer and closer, I’m going over my goals for the month of April,  as well as, working on few things I’m trying to make happen.

Personally, I think Autism Awareness Month has become way too commercialized and subsequently has lost a lot of its meaning.

As the years go by, I’ve begun to lose faith in Autism Awareness Month altogether.

I’ve shared my opinion of the whole light it up blue campaign. To me, lighting it up blue brings awareness to Autism Speaks and does not necessarily shine the light on Autism, at least in any meaningful way.

I’m not discouraging anyone from screwing in a blue light bulb.  I’m simply asking you this. If April is supposed to be about the people with Autism and helping the world to better understand and accept them, how exactly does advertising Autism Speaks help anyone I  real life?

Think about it, what does the color blue represent anyway? What does it have to do with Autism, accept bring attention to Autism Speaks.

I’m not saying there’s anything necessarily wrong with Autism Speaks. I just wonder why we give them more attention than we do the people actually touched by Autism.  I mean, we should be shining the light on the families that are struggling with Autism, each and every day. 

My belief is that if we help people to better understand what Autism is really like for our children, both young and old alike, we can help them to better relate and understand.

I also believe very, very strongly that we need to stop ignoring the adult Autistic community and acknowledge that they don’t necessarily need anyone to speak for them because they have their own voice.

There is so much we can learn from the adult Autistic community. Not only can they help the world better understand Autism but they have provided invaluable insight into the lives of my kids. I’m so incredibly grateful for that. 

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In my opinion, it’s one thing to advocate for our children when they are too young to do so themselves. It’s another thing entirely to dismiss the voice of an popular of people simply because we think we know better.

Autism Awareness Month has become a giant fundraiser for many organizations and I often question where that money goes and how many people in real life actually benefit.

Perhaps instead of looking at Autism Awareness Month as a means of making money, we could maybe help make it about the people and families that are struggling or need help. I think they could use the help and attention  a lot more than some of the multimillion dollar charities.

This is why I’ve made the very personal decision to sorta do my own thing.  One of my goals is to continue paying it forward in the name of Autism Awareness. 

I’m going going to try and donate more tablets, gift certificates and anything else I can get into the hands of my readers and those that need it.  I don’t make anything off of doing this and any attention this generates goes to further spread Autism Awareness, information and education, throughout the community.

What do you want to see happen this year during Autism Awareness Month? What are your plans?


This site is managed via WordPress for Android, courtesy of the @SamsungMobileUS Galaxy Note 2 by @Tmobile. Please forgive any typos as autocorrect HATES me. 😉

Check out my #Autism Awareness Store to find really cool and unique #Autism Awareness Clothing and Accessories, designed by me. 😉

For more ways to help the Lost and Tired family, please visit Help the Lost and Tired Family.



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Kasey Smith

;/

ShanEda

Awesome Sauce!

lostandtired

ShanEda thanks 😉

burstingautism

Lost_and_Tired AMEN!!!! I shared your article on my #autism FB page. Would love to collaborate with you on #autismaction

lostandtired

@burstingautism thanks 🙂

DeborahDeedeeWeckerle

great out look,im with ya….behind you all the way.ill still blue bulb but my reasons are more to irritate then promote,as a single mom of 5 on a block of noses in the air god for bid it rains …lol im frowned upon and now some are hearing i have a child that has a pet named autism,the frowns are huge..but i do have my loving supporters who would walk on hot coals for me as i would them,please do as you must help those in need truly make it a topic of awareness not about money..its about each child not what the books say,not this phd’s out look not this so called cure..its about each child each family..im new to this but im not new to the bull (my older one has rare blood defects and a heart disorder)iv heard my share of stuff but unless phds or therapists actually has one living in their home on a daily they dont get it really..books are great sure if ya need a paper weight…iv had therapists compare my son to others in front of me it twists me my man is not the same as another they are not the same as others either. each critter is individual  may be similar but books are a guide not the official ruling…you go with your gut you do what is your feeling of right..im with ya in spirit cheering you on kid…go get it done.

lostandtired

DeborahDeedeeWeckerle That’s awesome. You’re doing your own thing and I admire that. I’m sorry that you have to go through that though.

kerima_cevik

Well said. I’m pushing donating to local organizations who directly help families and help Autistic adults find shelter, health care and food. I think we should all look to where the money we raise goes each year. I applaud this post.

lostandtired

@kerima_cevik thank you. There is an organization called Community Betterment that has actually helped my family and others like mine as well. They are a national organization made up of volunteers. There are also local chapters and they raise money and target local people in real life to help. Their goal is to help people in ways that truly improves their lives.

SandraDalapaLucido

Have to agree whole heartedly.. I from experiance when needed help was only sent to websites.. I didn’t need websites to read I have done all the reading that could be I needed help and left empty handed and as far as rasising funds how much of these monies raised are for help I am not only speaking Autism speaks.. Lets ask the president of that orginization how much they make yearly 🙂

lostandtired

SandraDalapaLucido last I heard the number was a 6 figure one.

soulmirror

Lost_and_Tired #autismawareness is no good unless it leads to #autism action and bringing power to people w/#autismm & their loved ones.

Lost_and_Tired

soulmirror I totally agree. Amazingly well said.

soulmirror

Lost_and_Tired and more generally, a lot of awareness seems to stop at blue lightbulbs, pink ribbons, etc., & not lead to change.

soulmirror

Lost_and_Tired great post. As s/o w#autismsm the month belongs to you. Take it back.

Lost_and_Tired

soulmirror amen

JKROETCH

Hi,
Just wanted to say that I agree with a lot of what you said above.  Too much recognition goes to Autism Speaks and not enough light is shed on the families and their loved ones dealing with autism.  I belong to a fantastic support group, started by parents and through that group became part of an Autism Council group which represents the voices of all our groups around the province.  We now have our own Provincial Walk for autism and all the money raised in each area goes to support programs that our volunteers and parents, set up for the children, youth and adults living with ASD.  Not many fundraisers can boast about their funds raised, being spent responsibly and in the area where the funds were raised.  So happy my son is benefitting directly from programs we provide such as, social group, therapeutic horseback riding, music therapy, yoga, and art classes.

lostandtired

JKROETCH this is what I’m talking about. There isn’t enough of what you’re talking about. Great work and thanks for sharing. If you can email me you groups information, website, state county etc, I’ll add it to my resource list.
Thanks again

JKROETCH

lostandtiredJKROETCH
I live in Canada, so I’m not sure our group info. will help you out. 
Our website is being updated at the moment.  If you are still
interested, I will forward the info. when the new website is completed. 
The site contains mostly local info. about what our group is up to and
resources for our local families.

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