Does “Lighting it up blue” really help anyone touched by #Autism?

Disclaimer: I’m adding this disclaimer because there is always going to be someone that takes a post like this the wrong way.

I’m not saying the Autism Speaks or by extension, Light it up blue, is a bad thing. I just feel like it’s more about the organization and less about the people they are supposed to be helping.

Again, I’m not saying that’s the case. I’m simply sharing my thoughts and opinions. These are my opinions based on my current knowledge and understanding. I remain open minded, regardless of my opinions. I would ask you to do the same.

Why would I of all people, question the purpose of the light it up blue campaign?

I can already see the hate mail flowing in after this but here’s the deal. In my opinion, and it’s just my opinion, lighting it up blue is less about #Autism awareness and more about Autism Speaks.

Maybe that’s not a bad thing. I just can’t help but wonder if doing so really helps those with autism and their families. Again, just my opinion.

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I truly believe that if we want true, effective autism awareness, we need to each play our parts by sharing how autism has impacted either ourselves or a loved one. Share how it impacts your family in both positive and negative ways. The truth is, nothing in life is ever 100% positive or 100% negative. Autism is no exception.
If you want people to understand that autism is truly a spectrum disorder/condition, we have to show people how profoundly it varies from person to person. We also need the voices of many and not just one organization. I also believe that the autistic people of the world have their own voice, regardless of the form it comes in. We really need to listen to what they have to say, instead of speaking for them.

Over the last 2 or 3 years, I’ve made so many autistic friends. I’ve learned more about autism from them, than any other source, including autism organizations like Autism Speaks. I discovered that they are a fantastic resource, especially for parents raising kids with autism themselves.

Let me say this again, just so we’re crystal clear. I’m not saying that you shouldn’t light it up blue. All I’m wondering is, when we light it up blue, what are we really doing?

Are we creating attention for Autism Speaks or autism awareness because those are two very things. As for me, I will continue to spread autism awareness the way I have been. I’m going to continue to share my family’s autism experience and encourage others to do the same. I will also continue to push for real life families to get real life help.

Autism Awareness is a great thing but there is a huge need for our Autism families to get real, life changing help. There are so many of us out there struggling each and every day. Therapies, medications and even technology that can be used to help an autistic child or adult navigate their world is so often unattainable for monetary reasons.

There is a real need for people in the trenches and boots on the ground. We need real life help for real life families and right now, the resources just aren’t there. I’m just one person and yet I’m able to partner with companies that are willing to provide much needed technology to the families that need it. I can provide a place for parents and autistic people alike, to get support from others in similar situations.

Perhaps you don’t have the connections to do some of those things but Please don’t underestimate the value and importance of your voice and experience. I think it’s great that everyone can unite behind Lighting it up blue, I just wonder if it’s really what we think it is.

I welcome your thoughts and opinions on this. I’m open to your personal insight and would love to have a dialog.
Please let me know if you have trouble with leaving a comment buy usig the Contact Me page. ūüôā

 

 

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Joe Breier

Rob,  I do agree  that I think Light It Up Blue is more for Autism Speaks then for Autism families.  However,  I must say that it does promote dialogue and anytime people start asking questions like why do you have blue lights on, it provides all of us the opportunity to educate people on Autism both good and bad.  I do know that my daughter and I spoke to our local Ace Hardware last year and they donated 150 blue bulbs which we distributed to all of the people in our sub division last year.  It gave us an opportunity to connect with people and although many know my son in the area and protect him, some were not aware of his condition.  It did however bring a tear to my eyes when we drove around the blocks to see all of the support for our family.  Out of 145 houses all but 2 had their blue lights on.  Yes, it is mostly about bringing attention to Autism Speaks and I am not an advocate for them as they do not do nearly as much as our local Autism Society here in Wisconsin to help the local families, but if it takes a bigger name to get the word out and get the dialogue going then so be it.  People have to pick and choose their battles as to who they choose to support.  To me there is enough organizations that do not provide any support and just look for a hand out, any help we can get on at least getting the word out I will continue to support even from a distance.

lostandtired

@Joe Breier you make a really good point. Thanks for putting your perspective out there. ūüôā

Kim

I agree with you.¬† I think that the Light it up Blue campaign is an awesome free marketing experience for Autism Speaks, they even get us to buy stuff.¬† They don’t have it quite as well honed as the Susan G Komen for the Cure does with the year round pink campaign, but they’re new.¬† I don’t do it.¬† It doesn’t help, or spread awareness.¬† We have the puzzle piece as an effective “ribbon” for awareness,¬† Save the money you’d spend on nail polish and light bulbs and donate it to a more local cause.¬† When my son was still in school, I bought things that were outside of the budget of his classroom.¬† Now I contact my local Regional Center to find out where the small groups in need are.

sheridyer2

I understand what you are saying. Autism Speaks isn’t even a local resource in my neck of the woods. I still will light it up blue for awareness…. Only because this is the largest national group. They have been at spreading the word a lot longer than I have, and their reach is much further than what I as an individual could do. One thing I have learned however, is it doesn’t do anything loally for me. One thing i have learned about these large groups…. there is always going to be people who will disagree with something or someone within the group. A example of this would be breast cancer groups….. We had one recently that didn’t support planned parenthood, then next thing you know, NO Major company would donate, simply because they didn’t want to get connected with the politics with the situation. Now, the greater good that this company did is washed away in an instant due to nothing more than a political firestorm. I am not saying I agreed with the decision to not support planned parenthood, but I was very sad to see all of the hard work and fundraising they had done in other areas simply not matter, if that makes sense.
I see this happening with Autism Speaks in a way. Rather than focusing on the network already established and working within the Autism Speaks group, others would prefer to tear everything down. To me, it is like trying to build a whole new railway system across America rather than remodeling, reusing, or recycling the current system in place.
I like to think that where I live is a “black hole” for autism diagnosis, treatments, therapies, and awareness for children…. we actually have some good local support for those affected as adults in our area though. I think we only have it because of other local parents and guardians in the area that have been affected. Autism Speaks doesn’t host a walk in our area, or have conferences, or do anything for us locally…. It is all parent driven, with other groups founded by parents or guaridans at the helm….so although Autism Speaks reach is much farther than our local organizations, we will still light it up blue, simply to help spread awareness.

lostandtired

@sheridyer2 that was a well written response. Thank you. I guess my whole point was whether or not lighting it up blue actually spreads awareness about autism or Autism Speaks?

Grace

I appreciate your honesty that autism organizations do not help the people most affected.  That is a huge problem shared by many non-profits (autism related or not).  Can you put together a wishlist of deliverables that you would like a non-profit to give families like yours?  Do you want a check every month?  Do you want hospital bills paid?  How could an organization most help your family?

lostandtired

@Grace I can do that. I will also pose the question to my readers as well. Thanks ūüôā

lostandtired

@Grace I don’t know if I have a wishlist per say. However, I can share with you some things that my family has struggled with and perhaps others have as well.
Financial assistance is always going to be a need for many families, including mine. However, I wouldn’t ask for nor expect a check. I would love to see a financial assistance provided for families that can’t afford therapies like speech, OT or PT. I would like to see resources spent on educating the educators and providing them with better ways of helping their students on the spectrum.
I also know that housing can be a problem for some families as well. Either they can’t afford to move out of a dangerous neighborhood (like my family) or they can’t afford rent because their limited resources are going straight to their child.
I would love to see more support groups on a local level and maybe even recreational centers for special needs families.
There will always be a need for financial assistance, like I said before. However, I think that most people are aware of the resources that are already available.
These services just of the top of my head. I will put a post together and ask my readers what they think. ūüôā

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