Whose Planet Is It Anyway?

Wednesday, December 09, 2009

Autism Speaks to Hurricane Victims: What, You Thought We Cared?

I'm reposting, in its entirety and with the author's permission, an e-mail from a New Orleans mom whose family lost their home to Hurricane Katrina. After seeing an Autism Speaks page that asked for donations to help families with autistic children who were homeless after the hurricane, she made the mistake of calling to ask for help and got nothing but grief.

Thank you for posting this information about Autism Speaks' impressive generosity . . . to its staff, bankers, and PR people. It doesn't surprise me that Autism Speaks shovels piles of money at their executives and their Park Avenue rent. In 2005, I personally found out just how eager they really are to help the families they claim to raise money for.

Our family was displaced by Hurricane Katrina and lost half of our household goods in the flood, including a car. We evacuated to New England, where we had some relatives, but we were otherwise completely isolated from everyone we knew. I searched online to try to find out what happened to a New Orleans friend, another parent of a child with autism. I was thrilled to find her mentioned on a page for "AutismCares," a project that Autism Speaks was asking people to donate to, so they could help families like ours who were homeless and trying to help our children with autism cope with all the upheaval. The website was featuring my friend, who was supposed to open a school for kids with autism, but Katrina hit the city on the day it was to open, and the school building was totally destroyed. Give to AutismCares, the site asked, so we can help deserving people like this.

I sent an e-mail to the contact person listed on the site, asking them to forward my contact information to my friend, so we could provide each other with emotional support. I also applied for some assistance because we were about to move back to New Orleans from Massachusetts. I spoke on the phone with an AutismCares woman who wanted to know exactly how much money we were requesting, and what it would be used for. She would have to be able to justify the expenses to her boss, she said, so she would need us to fax her an itemized estimate before they could even consider sending any funds.

We had to get a trailer hitch for our car because we were going to tow a small trailer with goods that family friends had donated, so that we could start over. We knew from many summer trips back and forth between New Orleans and the relatives' house that the drive would take 2 1/2 days (driving 8-10 hours a day), so we were hoping that AutismCares could help us pay for two motel nights--we're not talking about the Hilton, mind you. Comfort Inn, Quality Inn. All in all, we were only asking for about $300.

The AutismCARES woman I spoke to took the most uncaring tone of anyone I had dealt with so far, and I'm comparing her to FEMA operators and Red Cross operators, two other organizations that were supposed to help us, but didn't, despite hours spent on the phone and multiple calls. The AutismCARES lady implied that we had no right to be hauling anything across country. If we had so much stuff, we couldn't be that bad off. (The only reason we had any of these things was because it was donated; we sure didn't have the money to replace what we had lost. Even if we could afford it, very few stores were even open in New Orleans yet.) She questioned why we needed to stay two nights in hotels. When I explained that we had driven the route many times before and knew how long it took, she told me in an exasperated voice that SHE routinely drove from Philadelphia to Florida in 18 hours. When I said that with two young kids, one with autism, such long days weren't really an option. Well, she said, SHE made the PA - FL drive with two young kids AND a cat, AND she did ALL the driving.

At that point, I gave up. There was obviously no convincing this angry lunatic that we deserved any help. From her tone, she clearly thought we were just leeches. I had too many other things to do in order to move out from our temporary lodgings and prepare for a cross-country drive. I couldn't waste any more time begging for help from someone who wouldn't do anything for me but make me cry.

Only later, as we made the drive, did I realize how much shorter a trip from Philly to Florida would be, straight down the eastern seaboard. We were going diagonally across half the country. Just getting from eastern Massachusetts to the far side of New York City takes most of one day. Driving from Philadelphia, she didn't have to deal with New York at all.

Later still, after we were resettled in New Orleans, I finally tracked down my friend, who had also made it back. We had a great reunion, and I eventually asked her if the lovely people at AutismCares had ever forwarded my e-mail to her. She looked like she wanted to scream. No, they had not, she said, but that didn't surprise her. They had been using her story to promote their cause, panhandling for donations so they could help all the families displaced by Hurricanes Katrina and Rita, implying that they were going to provide her with a huge donation so she could re-establish the school she had worked so long and hard to open.

"They never gave me a cent!" she said. "Not a penny!" When it finally became apparent that they had no intention of helping her, she had to contact them repeatedly before they took her name and story off their website.

Autism Speaks. Appropriate name. They are ALL TALK when it comes to directly assisting the families they claim to care about so much.

While I was verifying the accuracy of the above statements, I contacted the friend whose school was destroyed. She told me that it is all true, that Autism Speaks used her story for promotional purposes without ever giving her any money for her school, and that it went beyond that...

I was opening a school for autistic children the day Katrina devastated New Orleans. Not only was the school totally destroyed but I lost my home and all of my personal possessions, as did my parents, aunt, and everyone in my neighborhood. We couldn't access money from the bank and had to figure out where we were going to go and what we were going to do. I discovered that Autism Speaks or Autism Cares was in the area helping families. I called one of the people who now works for Autism Speaks and lived in Baton Rouge at the time. She said they would provide me with money, clothing, etc. I have a family of 5 and we all had 2 days worth of clothing, which is normal when evacuating. When I gave her my cousin's address in a well established, safe neighborhood in Baton Rouge and she discovered it was a predominately African American neighborhood, she said she didn't go to neighborhoods like that...

My family of 5 and I were sponsored by a church and autism organization in Austin, Texas where we spent 15 months being displaced before we could return to New Orleans. I was told they would help with the school. Well, we received nothing. Once I returned to New Orleans to rebuild my home and the school, I contacted Autism Speaks which was much larger by then to see if there was any money for school equipment, etc. I was told to look on the website and see if there was any grant I was eligible for. Well, there wasn't. I never heard from them again and was pretty much brushed off. I don't know of anyone that money went to or organization here in New Orleans trying to make a difference.

There is more I can say but I think this answers your question. All I can say is that Autism Speaks, doesn't speak for me.



  • I know nothing AS does should surprise me any more but...OMFG!

    By Blogger Niksmom, at 11:51 AM  

  • This is something that journalists salivate over. Spread the word far and wide!

    By Anonymous rglovejoy, at 12:07 PM  

  • Wow. I often snark about Autism Speaks' rhetoric, but in this case, the actions are even worse than the rhetoric.

    By Blogger codeman38, at 1:03 PM  

  • Thanks, ABFH, for putting this out there. Just when you think that this organization couldn't outdo itself, well...there you go.


    By Blogger Club 166, at 1:40 PM  

  • Really reprehensible, using this woman's grief to raise money, but not giving her a damn dime! Offering hope to so many, but not delivering so much as a peanut butter sandwich! How much does Geri Dawson make per year again? $467 thousand, isn't it?

    By Blogger Clay, at 4:18 PM  

  • ABFH

    This sounds like there is some con-artistry going on here. Could Geri Dawson and the rest of the shrills at AS be indicted in a criminal case for fraud?

    By Blogger A better future for all, at 7:26 PM  

  • Clay: $670 thousand, including a hefty relocation allowance.

    Cube Demon: Not likely. They always use very carefully chosen language in their public statements, so as to give the impression that they help families while avoiding any specifics for which they might be held accountable.

    By Blogger abfh, at 7:45 PM  

  • Well, I had two of the numbers right...

    By Blogger Clay, at 8:09 PM  

  • "Cube Demon: Not likely. They always use very carefully chosen language in their public statements, so as to give the impression that they help families while avoiding any specifics for which they might be held accountable."

    This is straight from the playbook of newspeak from George Orwell's 1984. http://en.wikipedia.org/wiki/Newspeak

    By Blogger A better future for all, at 8:28 PM  

  • Outrageous!

    By Anonymous Stephanie, at 11:42 AM  

  • OMG...karma is going to be one bitch!!!!!

    By Blogger Usethebrains Godgiveyou, at 12:11 PM  

  • No wonder I hate that organization so much.
    I'd never give them a cent.

    By Blogger Lyn, at 4:51 PM  

  • To be fair, it's not just Autism Speaks that runs Autism Cares. In fact, they're not even the main administrator. The Daniel Jordan Fiddle Foundation, Dougie's Team, TACA, and Safe Minds are all partners with Autism Speaks in the Autism Cares initiative. Really, I don't love defending Autism Speaks, but in this case it might not be entirely their fault.

    By Anonymous Anonymous, at 12:39 PM  

  • Of course none of us can actually hear empty promises.......I wonder why?

    By Anonymous Maddy, at 8:38 PM  

  • Typical Autism Speaks actions. By the way, may I ask how I can get my blog on Autism Hub? There doesn't seem to be any contact info on the main Autism Hub page...

    By Blogger Jeremy Gallen, at 7:01 PM  

  • @Der Jermeister: I don't think Autism Hub is adding new blogs right now, but you could try writing to admin@autism-hub.co.uk to ask.

    By Blogger abfh, at 8:11 PM  

  • ABFH, can I refer this to someone down here? I think this may be just what I need to cut Autism Speaks off from any Australian contact.

    By Anonymous Anonymous, at 6:29 AM  

  • Timelord, go right ahead.

    And if anyone feels like rating AutSpeaks in an online survey, here's a link to a survey put out by NAMI. It's mainly intended as damage control for news reports about all the money NAMI takes from the pharmaceutical industry, but it was interesting to note that both NAMI and AutSpeaks are rated very unfavorably by the survey respondents.

    By Blogger abfh, at 9:42 AM  

  • ABFH

    May I say something here. I know it's way off topic and I apologize. There are certain people who hold us back. They use values in a manipulative type of way. They use good values and twist them to their own ends.

    Timelord knows what I'm talking about. I call them the advocates for self-responsibility. Here is an example of one guy who hates aspies. http://www.belch.com/blog/2007/04/17/seung-cho-was-total-loser/comment-page-3/

    In my humble opinion, if we're going to get anywhere in the end and win then we're going to have to challenge the american values. We will have to challenge those like farmwifetwo here: https://www.blogger.com/comment.g?blogID=8353442983052145851&postID=8616513307789599071

    She has the mindset that we're owed nothing by the world and we're entitled to nothing. We have to challenge things like this ABFH. Timelord can testify to this if he wants.

    By Blogger A better future for all, at 10:24 PM  

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