Saturday, February 16, 2013

In Defense Of Autism Speaks





(originally written & published on February 16, 2013)



As April is fast approaching, and Autism Awareness Day & Month & the "Light It Up Blue" Autism Speaks campaign are right around the corner, I felt compelled to say something in defense of Autism Speaks.

First off, I will readily admit that I'm not always a huge fan of everything Autism Speaks.  I wrote a post last April about supporting smaller, more local autism charities.  You can read that HERE.  But in that post I did write this…

"...I know there's always a lot of controversy around Autism Speaks … but I have no issues with AS with the way they portray autism. Others in the Asperger’s community feel that AS doesn’t represent them, and maybe it doesn’t. But it does seem to represent those with severe debilitating autism. My son has SEVERE autism..."

But I’m getting off track.  That’s not the reason I’m writing today 

The reason?  Because every March/April the whole anti-Autism Speaks thing comes up again…and a big reason people bash AS is because  they say their executives make too much money or they spend too much money on parties and events.

Mark Roithmayer, President - Salary: $400,413
Peter Bell, Executive Vice President - Salary: $265,981

I’m here to say it loud & proud…the whole “their executives salaries are too high” argument is just  plain silly...

I have friends who work in the nonprofit world and every big nonprofit gets this bad wrap... but you know what? You gotta spend money to make money...

If you want the best, most competent, experienced ceo & executives to take your organization really far you need to pay for them… And these salaries are the going rate for these types of executives in NYC.

Also, if you want to fundraise on a big scale, you gotta throw parties... that's just how it works.

 I raised $$ for the Michael J Fox Parkinson’s Foundation last year and it is the same way... Their execs make big bucks!

And I raised just over $3000 and I’m invited to a lavish "awards dinner" in April....

Too much, too extravagant?  Maybe.  That was my first instinct… but I gotta admit that I’m excited to go.  And I’m sure the hope of the party is probably to bring in some more corporate big bucks donors... So the party will more than pay for itself.

And on a national scale, just like Autism Speaks, the Michael J Fox Parkinson’s Foundation is doing a lot of good...

Maybe on paper maybe the percentage of every $ that gets spent on autism or Parkinson’s is smaller than you'd like? I get it... but they are doing this on a MASSIVE scale with millions of dollars in play... And on a national level they do a lot of good...

So, back to Autism Speaks.  Hate them for other reasons if you want.  You feel that they put too much money into research. I get it.  You’re kid has aspergers and you don’t like the way they portray autism.  I get it.  (I don't agree, but I get it)  :-) You don’t think they don’t do enough in your local community.  I get it.

But the high salaries and the extravagant parties?  That’s just the cost of doing business on such a massive scale.

That is all.  I will get off my soapbox now and prepare to be torn apart by y’all…

:-)

39 comments:

  1. i think you need a bigger soapbox. *cackle*.......cause as far as I'm concerned, only parents who have to deal with bodily fluid issues......MASSIVE DEFICITS in communication.....parents who honestly can say the future scares them to death can preach....

    i've been in this autism game for 13 years and i can only count on one hand that I have been lucky enough to benefit from "agencies".......we literally have had to put on our game face and fight each battle.....mabye something like bonnie and clyde? (lmfao)..........

    when these executives can life a day in my shoes....then mabye i can give their manifesto a chance......

    ok, done with my rant.....now for a cup of coffee.....aloha from hawaii. :)

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    1. Aloha from Kailua--do you live in Hawaii, too?

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    2. yes, i live in wahiawa, used to live in lanikai with my parents........ :)

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    3. My issue with AS is that as far as I could tell, they do NOT have anyone on the Autism Spectrum in any position of leadership.

      You might enjoy this interview I did a few months ago with Temple Grandin's Mother: http://ipaimpress.com/eustacia-cutler/

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    4. I knew there was opposition to the Autism Speaks but I wasn't quite sure why. I read somewhere some autistic ppl weren't comfortable with the logo a puzzle piece. But, I knew it went deeper then that. My daughter is 3 in half years with severe autism and nonverbal. I know I am new to all this, but I am thankful for all the people who have devoted thier life to put a spot light on Autism. And that means you Autism Daddy! I feel blessed my daugther was born in an era where I'm not considered a "Refrigerator Mother" I don't believe my low self esteem could handled that stigma. I applaud both sides for educating people about Autism. Too bad they can't join together, just think of all they could accomplished. But, what do I know :)

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  2. I dont light it up blue for Autism Speaks, I light it up blue for my son and everyone dealing with Autism. I have the same thoughts as you regarding them. April is Autism Awareness Month not Autism Speaks month.

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  3. j George, how arrogant! Only the parents of the severely autistic can preach? Sad. It's just like "mommy wars" in autism land, one parent after another berating each other because their situation is worse. Sickening. There is very little support because of this stupid game. I have 4 kids, both of my boys are on the spectrum, one is an Aspie one is severe. Neither have an easy battle....I couldn't in a million years tell another parent they have no place to preach. Everyone is affected in their own way. I'm all for Autism Speaks, at a minimum their awareness campaign has done wonders. That's enough for me. The execs are doing their jobs well, let'em be paid- autism isn't so scary of a word to society anymore- they must be doing something right.

    there's my rant. Thanks AD

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    1. Amen! Awareness!

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    2. i am the way i am because for YEARS my cries for help have been met with closed doors, deaf ears, and turned backs. it is literally HURTFUL to hear parents who miss the little miracles that their children do everyday, normal or autistic. i am the way i am because of stares and snide remarks in public. i am the way i am because "educated people" have told me to give up on my child at the age of 9. I have had administration tell me "oh the bus has to pick him up in the morning late because he is not priority".........my rant can go on and on, but i only say what i say because after my soul cries for years looking for help, and being rejected, a mother's shell toughens up like armor.

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    3. Never do I complain about the degree of autism a child has, but it is just jealousy that I have for high functioning autism families, I wish I could celebrate the abilities that they have.

      Every family, regardless of severity, has honest concerns and fears.......don't we all? :(

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  4. If it's blue for autism and people can identify it as hey that's blue for autism and they're lighting it up - good. I light up blue for my son. So sorry your organization didn't come up with something to honor my amazing child.

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  5. I agree with you completely. To add my own soapbox portion...to make awareness you need to make wave and you need to portray the worst. In other words, the worse something seems the more money you make. That sounds horrible I know, but its true. My son has Asperger's and at his therapy center, I HAVE had parents tell me that I have it easier because at least my son can talk. That is true, he can, but he still has his struggles. Truth is, I don't know the anything else and neither do they. Truth is, united we stand. Truth is, whatever we can do to raise money, do research, support each other, and be the best parents we can be is something I will support. I believe Autism Speaks does do that, and I am behind them and their cause.

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  6. As an adult with autism, I don't like them because of their negative ad campaigns. Yes, it may help to bring in the bucks, but I have to fight every day just to remind people that I DO have issues and when they do appear, it's not because I'm crazy, in need of attention, or because of whatever reason. I don't need all the negativity dumped on top of me. Yes, I may never be a famous ball player and it's becoming more obvious by the day that I'll never date or whatever (work and my health take up all my time - and trying to explain to some dude about autism only to be given a "But you LOOK normal!" isn't worth the expended energy), but you know what? I AM somebody that isn't a tragedy. I'm may be a statistic, but they're probably not including adults and I AM HERE! Life isn't perfect and I will die eventually, but not from autism. That's why I don't like Autism Speaks :-) I respect them on some levels, but, as an adult, they also make me cringe.

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  7. AD- have you subscibed to Karla Fisher, on Karla's autism page(Facebook)? She is an autistic autism advocate who explains why she thinks Autism Speak's message is harmful to autistics. You really get a different viewpoint from the autistic, instead of just a parent perspective. She has offered her services on the board of AS, but instead they told her to organize a walk.

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  8. I disagree with most of your post but I genuinely applaud you for speaking out for what you believe and approaching the topic rationally. :)

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  9. I went to a meeting where several of the studies that were presented had been funded by Autism Speaks. They were useful and applicable to me as a mom of a diverse population of 3 boys who span the spectrum. I felt that my views of AS had brightened somewhat based on that.

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  10. In our life with Autism (I say "our" because around here it is the whole family not just my son nor my "battle") I have found that the miracles we have - my son now speaks finally potty trained mostly (by age 9) I count the blessings - they may not have come because of Autism Speaks - and personally I knew about autism from a movie "a SonRise" that I saw when I was just a child myself.

    I agree with the you have to spend to make ... even if many think it can be done on "air" alone - you have to pay to get people who wil donate together, you have to provide a platform even if it doesnt cover everyone - at least the umbrella is open and can be seen.

    I have my issues with Autism Speaks, but at the same time - the fact that they get the word out - positive or negative - PEOPLE (not just AS parents/families) are talking and researching information online to find out more - and they are donating to research which my son may not need but another autistic child may benefit greatly from. WE need MORE organizations that address every aspect of Autism... but if we tried to have one that met the circumstances of each child with autism and/the obstacles facing their families - we would have too many... as it has been put so well before - you meet one child/family with autism you have met one child/family with autism... we as a community are as diverse as any neighborhood /county/state we are all immersed in the AS WORLD each different but each the "same" in so many ways.
    I don't begrudge the salaries - if I had the resources to pay for the best I would gladly do it - be it an engineer to build, a doctor to heal, a contractor to construct or a "board member" to get things done.

    Could they do more to show the broader differences? probably.Could they do more to represent Aspies, or adults with AS? Probably. Because they are out there - there is awareness that was NOT around ten, fifteen, twenty years ago. Because they started the conversations - we can debate and argue and ask for more not just for our kids but to help us as families... No all the doors are not open yet, No all the pieces are still not fit together, but at least its a start.

    ok maybe its a bit scattered but hope someone gets it. - rant done... Thank you AD for speaking up and speaking out. Rant on ;)

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  11. i live in the uk and no absolutely nothing of autism speaks...but i have seen the pictures of huge famous monuments and building lit up blue and i wish we had a charity make that impact over here! a charity that cn bring the word autism to the publics lips...if they can achieve that it then paves the way for you to tell your own story! sadky all we seem to get over here is stories of people 'growing out' of autism or newspaper articles of benefit scrounging autistics..and at the bottom is a tiny quote from the national autistic society being all polite and formal..i sont want that! i want a charity thats gonna shout and scream and stir it up abit so i can then come forward and highlight my experiences to those who are listening. be thankful youve got someone who make autism speak!

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    1. I have been in national press, newspapers and on the radio talking about the experiences of Autism, showing a very balanced view I would hope. I do this as a parent of a child on the spectrum. I have not seen any articles that talk about people growing out of Autism so would be interested in seeing those.

      I also know lots of people who are actively doing their bit to put Autism in the forefront of people's minds. Indeed, it appears to be working. It has more prevelance than it did years ago and we are working towards changing that all the time and more importantly, changing the publics perception.

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    2. I'm in Australia and most of the public mentions of autism run along the lines of... "A seven year old boy who went missing from X-suburb three days ago was found today walking along the railway tracks. He has autism." or "The five year old autistic boy walked away from his family yesterday evening. Police are still searching for leads as to his whereabouts."

      Not exactly brilliant mentions, admittedly, but mentions nonetheless.

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  13. I work for my local branch of the NAS on a voluntary basis. I am mum to a 15 yr old girl who has autism and associated learning difficulties. Whilst I am not in favour of massive salaries, to me anyone who can raise awareness of Autism is worthy of something. Isn't that what all this is about? Greater awareness leads to education and then we move forward (hopefully). I too have had good and bad experiences, the feeling that nothing good lasts, but I stick at it. I organise and host an annual event that last year raised £6,000 for two uk based Autism charities and am doing another one this year. If we all do our bit, then we are all working towards the same goal.

    Nice posting Autism Daddy. Shame you expected to get ripped apart. Everyone is entitled to opinions and everyone's experiences are different.

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  14. Thank you AD.... Autism Speaks (AS) may pay $ for Execs, but that is what it takes! I am glad someone other than me said it! I am an Autism Mom, AS volunteer & fundraiser and a former interim employee when our local chapter was between Directors. A few things I think that are worth mentioning: Mark Roithmayer is no longer President. The other top Exec, Peter Bell, is still with AS. (I think it is worth noting that he too, is a proud Autism Daddy). Many of the top level Execs & Managers at AS are proud autism parents, and they do their jobs, not only for a paycheck, but because they want a better world for their children!

    Many anti-AS parents that I see online have no idea of the huge impact AS has had on the US and the World:

    Since founding in 2005, Autism Speaks has raised more money for autism research than any other autism organization. Just last month AS announced the award of $4.8 million in funding for 14 new research projects. To date, Autism Speaks has committed more than $195 million for research projects that advance understanding of the causes, prevention treatment and cure of autism spectrum disorders (ASD).

    Autism Speaks’ Light It Up Blue Campaign has raised more awareness for autism in the last 6 years than any other autism organization has done ever.

    AS has passed autism insurance coverage reform in over 30 states and has a goal to have it passed in all 50 states! There are currently 5 states that AS endorsed bills and another 7 that are actively pursuing legislation.

    AS Family Services have created 20 tool kits that are available online for free for families who need help with a variety of issues (newly diagnosed/100 Day kit, Aspie, Dental, Transition, Community, etc.). They have also implemented grants for a variety of programs and services to benefit our autism communities. And, in my opinion, the AS website is also one of the best sources for scientifically based autism information on the web.

    These are just a few of the huge accomplishments that AS has brought forth in the last eight years, and for this, I am THANKFUL!

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    1. I don't agree with everything that Autism Speaks does, but at least they are out there advancing awareness, early intervention, desperately needed grant streams, and medical community education and awareness. Some persons with autism are very fortunate not to need or want a cure. Others, like my oldest son, have had even their most basic dignities stolen from them by the disorder. They have the right to treatment.

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  15. Here in Australia we have the whole light it up Blue for Autism as a mum of an girl on the spectrum blue is not our colour but thats my thing lol! I was going to donate as this is the first year I can accept the diagnoses (two years later) when I really looked where the money was going it was going to a fund to light up the Sydney Opera House with blue lights! $40,000 was needed to light it up!

    I can't give to something like that no way $40000 is a special part time special needs teachers wage or a music therapist it doesnt get the message out there people go "wow the opera house is blue why and when told they go oh!" and nothing more is mentioned unlike breast cancer things everyone knows that.

    And before I leave my soap box why Blue?

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  16. I disagree with you all!!!!!!!!!!!!!!
    I used to work in the non profit world before I quit to stay home to care for my autistic child. You cant tell me because anyone makes this much money that is the reason Autism Awareness it out there. He does not work any harder than anyone else out there. Take his salary cut it in half multiply it by just the 9 years my son and your son have struggling with this and that is 1,800,000.00. To me that is A LOT of therapy that can be paid for A LOT of kids and accommodations, IPADs etc.... and yes gulp even research

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    1. Technically, how do you know how hard he works? You don't. I for one appreciate what they have done for Autism Awareness and Research.

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  17. you don`t need to have money to make money. that`s ludicrous and totally opposite to what america stands for. almost every famous company was started with no or little money. almost every one of the people who started those companies made no money in the beginning. it`s not even about the money. most of those people did it for other reasons. many of them had no clue what was going to happen to their business.

    i work hard on autism awareness every day. i make no money, and i want no money. it`s not about the money. it`s about the autism. i don`t need a ludicrous salary to talk to people about autism. nobody does. i don`t need a ludicrous salary to organise events, or hold events. all of it can be donated. yes, it can be donated, instead of money.

    i could use money to do more for autism awareness, but i don`t need more money myself. i don`t see any reason why i should live like a millionaire while most of the people who need help are living at or below the poverty line. it`s irresponsible and unconscionable.

    if i truly care about people, i will also go out of my way not to offend the very people i`m trying to help. it`s just the right thing to do. and if i have offended them (or anyone, because image is important as well) i will apologise and try to fix it. i don`t see autism speaks doing this.

    instead, it seems to be business as usual. in fact, it seems to be worse. not better. i`m not religious, but seriously... what would jesus do ?

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  18. I don't like them because of their "um yeah we could have saved millions if we did a phone survey" studies on gut issues and sleep issues (2 most recent ones). Two things that 90% of my friends kids including mine go through, that people have been talking about for years. I'm currently reading a book in regards to yeast heath (for myself) that was written in 1994 and in it the author talks about cleaning up the gut and changing diet helped autism symptoms. 1994 and the focus of the book wasn't even on Autism.

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  19. Autism Speaks has a very low rating from Charity Navigator. One third of their funds goes right back into more fundraising.
    And what exactly do they do? Spread a message of despair, a message that says to autistic people (such as myself) "You have ruined the lives of your family..."
    If someone wants to donate to a worthy cause, they should support Food For the Poor, which will use 97% of donations to save people's lives by giving needed food.

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  20. I know families that would have never known to ask if their child had autism if it wasn't for AS's commercials and others who have received "locally", getting into therapy programs that were sponsored by AS so as for the "negative" representations, you have to hand it to them for bringing awareness. What I find curious - it gets such a huge backlash - compared to groups like TACA or Generation Rescue. I don't understand why Neurodiversity advocates don't have a bigger problem with organizations like that mentioned, that very plainly want to do away with a person's autism by curing it or recovering them from it.

    Also, there was a TED talk regarding why non-profits aren't successful as big corps, but if they operated like them, they could with past campaigns - "The way we think about charity is dead wrong"
    http://www.ted.com/talks/dan_pallotta_the_way_we_think_about_charity_is_dead_wrong.html

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  21. I don't agree with everything AS representatives say, but at least they've been there to help families. Thank to their hard work, more than 30 states now have laws in place so that their kids can finally get access to treatment that previously only rich families could afford. NONE of the other organizations, and certainly no one in the neuro-diversity crowd-has done so much for kids. my child needs a lot more than just acceptance, but I'm happy for someone who has a job, family, friends and a complete life. That isn't reality for most people on the spectrum.

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  22. There is lots of money moving around there
    http://www.autismspeaks.org/sites/default/files/documents/2011_tax_form_990.pdf

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  23. Firstly, I would like to say that I normally keep my opinions to myself. Not out of fear or lack of interest in the topic, but because internet trolls get my blood boiling way too easily. Its not worth it to give them the fuel to start the nonsense they thrive on. That being said, I wanted to share my opinion here because this is such an important subject for so many of us parents in the Autism Community. I will never argue that my son has it harder or easier than the next child affected by Autism, but being that its a spectrum, I know things are different for every child. They all struggle and its heartbreaking to witness in any form. One resource I like to use as a learning tool for myself and to get insight on what I can expect for my son in the future, is the perspective of Adults living with ASD and associated disorders. My child is only 2 1/2 years old, and his diagnosis was not very specific because he is so young. That scares me just knowing that even the experts have no idea what to expect. That being said, I love that AS has brought awareness for Autism to the forefront, but I do not like the way they spend their money or how they treat adults with ASD like they are a hopeless tragedy or some kind of lost cause. Its because of this that I cannot support them.
    I've included links below. First is Suzanne Wright's letter regarding AS's view of Autism and a Call to Action prior to last years summit in Washington DC. AS blantantly refused hundreds of Autistic Adults who volunteered to be a part of the summit and express their views on growing up with Autism. Its like AS wants to portray the poor little autistic child, but refuses to acknowledge that those children grow up, they have feelings, and they want people to understand them and accept them.
    The second link is from John Elder Robinson. Up until Nov of 2013 (and when the letter in the first link came out), he was the only Board Member of Autism Speaks who actually has Autism.
    Please read his words and try to understand why so many people feel the same way and boycott Autism Speaks.

    I feel a lot of things on a daily basis regarding my sons diagnosis. Its still a grieving process for me, and some days are much harder than others. But I look at how much he struggles and it makes me see things a little differently. If he can do this, then I need to suck it up and help him do it. Point being, as far as I am concerned, my child is not a tragedy. Would I take his Autism away if I could?? Damn right!! But I would rather enjoy him then wish he were different. Hes my son, and I am so proud of him and I love him so very much because he is perfect in his own way. So, when an organization is willing to count him as a statistic and/or tragedy, there is no way in hell I can support them in good faith. Especially knowing that once he is an adult, they won't even acknowledge him as a person.
    But that, Autism Daddy, is just my opinion, and I am happy that I feel like i can share it here with you without someone wanting to rip my face off... Thank YOU for all of your inspiring posts and useful information. You are a huge help to so many of us!


    http://www.autismspeaks.org/news/news-item/autism-speaks-washington-call-action

    http://jerobison.blogspot.com/2013/11/i-resign-my-roles-at-autism-speaks.html

    "Autism Speaks says it’s the advocacy group for people with autism and their families. It’s not, despite having had many chances to become that voice. Autism Speaks is the only major medical or mental health nonprofit whose legitimacy is constantly challenged by a large percentage of the people affected by the condition they target." -John Elder Robison

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  24. http://autisticadvocacy.org/2014/01/2013-joint-letter-to-the-sponsors-of-autism-speaks/

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  25. It blows me away that everyone can agree that no two autistic children are the same and one of the main "mottos" if you have met one autistic child then you have met one autistic child. Or DIFFERENT NOT LESS. AND THEN AS PARENTS WE FIGHT AND QUIBBLE OVER WHO'S PATH SUCKS THE WORST? AWESOME EXAMPLE FOR THE KIDS?!?! Just agree everyones path is different and they all suck to different degrees.. BUT JUST LIKE OUR CHILDREN WE ARE DIFFERENT NOT LESS!!!!! PRACTICE WHAT YOU PREACH Y'ALL!!!!! CANT WE ALL JUST GET ALONG? WHAT GOOD COMES FROM FIGHTING ABOUT WHO HAS IT WORSE.. ?? HOW DOES HELP THE KIDS? I AM THANKFUL FOR ANY ANY AWARENESS. BECAUSE LAST TIME I CHECKED THAT WAS WHAT WE ALL WANTED.. I WOULD BE HAPPY IF A PORN STAR PAINTED HERSELF BLUE FOR US.. AWARENESS IS AWARENESS EVERYONE!!!

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