If you’re already on the spectrum, or parent an autistic child, I can see how these days may seem pretty stupid. Although this entry is intended for those who may not be directly affected by it and are looking for a different point of view, everyone is free to read. It’s all my point of view, and I am the only person I speak for.
I’m not a fan of Autism Speaks, the ones behind the Light It Up Blue campaign. I’ve seen enough videos and articles out of them minimizing the actual impact of people with it, while maximizing the pity factor and/or how it effects caregivers and family. For an organization supposedly geared towards helping those on the spectrum, they do a pretty terrible job of it.
I’ll provide some links at the bottom of this entry.
However, there’s no denying that raising a child on the spectrum can be very difficult, as it is for any child in a neurological/physical minority, and that those with autism struggle with things others don’t. While that’s important to remember, I feel those aspects are often the only ones concentrated upon, which is part of why autism is so often seen as a disease in need of a cure.
In reality, autism is a neurological difference. It comes with challenges that need to be addressed in accordance with each individual’s unique needs, but it has its gifts which manifest differently in each person, as well.
There’s no cure, and there’s no need for a cure. Children with autism naturally grow up to become adults with autism, and that’s not a bad thing. What is needed is understanding, effective education for everyone and respect.
On one hand, I tend to dislike “awareness” events. They tend to boil down to wearing a color or ribbon for that span of time without any real understanding of the issue. On the other hand, they do offer a clear cut opportunity to share and absorb information otherwise unavailable.
So, instead of just wearing blue or donating to the most vocal charity, why not read or watch works created by people on the spectrum? Even if it’s a five minute video on YouTube, try to put a little time aside to really listen to someone who is willing to talk about their experiences and learn more about how they see the world.
Let’s keep pity out of it, too. Instead, keep your mind and heart open to new points of views or experiences. Let pity be replaced with empathy and understanding when it comes to difficulties. Add some heartfelt support when it comes to pet projects and milestones.
An autism diagnosis is not the end of the world. Perhaps it’s really the beginning of an amazing new world. Like all great things, the beginnings are often the toughest, but they’re almost always worth it as the journey continues.
Here are a few resources run by folks on the spectrum that help others in need and/or offers up their own take on the world:
ASAN – Autistic Self Advocacy Network – Self explanatory.
Autism Society – There may be a local affiliate of this organization in your area. It’s worth checking out!
Neurowonderful – She has quite a list of resources in the video description of her “What’s Wrong With Autism Speaks?” video
Project VoiceScape: No Pity (A Documentary by Drew Morton Goldsmith – Very well done video by a nonverbal autistic man about the advertising, fundraising, and the importance of treating those on the spectrum with the dignity afforded others with other perceived disabilities.
As usual, if you have any other resources, please send me a link, so I can check them out!
Here’s why I refuse to support Autism Speaks:
There are no autistic people on their board of directors. – A number of the members have children with autism, and while parents do have valuable insight, an organization cannot hope to represent a group of people when no one in that group have power within it. However, this might also explain why so much of their material is so exclusive to parents.
They may slowly be changing, though, as of last December, they launched a campaign asking for people with autism to send in their own stories to publish on their blogs. It’s called “In Our Own Words”. Who knows if that’ll help turn the tide for them?
They’re “cure” based. – They’re known for wanting to find a cure and ways to prevent autism. This area has become simultaneously foggy and heated on an ideological level, as many do view autism as something that’s “wrong with a person”, while others don’t. Personally, I don’t see ASD as a problem, perhaps because of my personal experience of being viewed as defective due to my own wiring. If you agree with me, avoid supporting this organization.
This doom ‘n gloom attitude. – The whole tone of this “PSA” makes it sound like the 1918 flu returning or black plague is becoming epidemic again. The rest of them are pretty much the same. It looks like they took down the horrid “I Am Autism” commercial. If curious, you can find it here, or you can just search for it on YouTube, though.
Their 2012 Tax Form (2013 isn’t up yet) –
They paid a total of $22,360,833 to 278 employees (Up $3,410,709 from the year before), and $25,000 in professional fund raising fees. That totals $22,385,833. What really got to me is the yearly salaries they paid their upper administration, which you can see for yourself in the form.
Meanwhile, under “Grants and similar amounts paid”, which I’d guess is considered medical research and families in need, they paid $16,138,087, down from $17,742,139 the year before. According to my calculator, that’s $1,604,052 less.
My point is, if they’re spending more money to pay employees and advertising agencies than to support the cause they’re allegedly all for, who are you really supporting when you give a donation?
Check out the rest of the document for more info. Those bits are just what I picked up from it. I got it from the Autism Speaks web page, by the way, so it’s not from a source against their cause.
There are other reasons, including comments I’ve seen them endorse on other web pages, but unless they make quite a few changes to their system, they won’t get my support.