Autism Speaks-NOT Autism shuts up!

ONLY 4 % of ALL of Autism Speaks money goes to servicing families or people with autism!  This according to their own hand out!  If you read NOTHING ELSE in this blog know that THEY ARE NOT IN THE BUSINESS OF HELPING ANYONE ON THE SPECTRUM!  My mind wants to say I read 8% but it can’t be that high as I almost cried…these are again THE NUMBERS THEY GAVE THE ATTENDEES AT THEIR OWN FUNCTION!

I had wanted to write this blog along time ago but never had the time.  Despite being a beautiful summers day with my 3 kids happily playing at their aunts house I decided to post so that I could relieve my brain of this urge to scream AUTISM SPEAKS SUCKS…and move on with my peace SEEKING mission by moving autism out of my life (except my son…of course).

I was asked by Autism Speaks to join a conference back in April about community outreach and how they might be able to do good for local groups.  I said NO initially and thought them brave for even asking me.  It is widely known by the local heads of autism speaks (not deserving capital letters) that I find their organization a fund whoring mess that does not contribute to the what people believe they are about UNLESS they attend a meeting in which case they will see….their intention has never been to help people who actually have autism!  Some might actually know this but not most.

I went to the meeting anyway but asked to bring 2 friends who actually have autism and bravely they agreed!  I asked to invite these people because autism speaks at the time had not a single person with autism on their board of directors (an over paid group of losers who clearly do not respect people with autism or they would NEVER not EVER have allowed I Am Autism to be produced under their name!  The film which you can Google it full of LIES and BULLSHIT about how awful it is to have autism and how sad all us parents are!  THIS IS NOT CANCER!  It is autism and my son will live to be at least 50 which is longer than most kids with Neuro Blastoma….so lets get real and move on!

So, I went to the autism speaks meeting and attempt (very publicly) to suggest they try to educate parents the way I had for years on Managing Behaviors which is the touchstone for why our kids grow up and spend their last 20-40 years (the life expectancy in a mental institution is not great) in a mental institution!  The very good looking but short sighted man sitting next to me was so utterly confused he could not get his head around the concept that autism speaks that was currently giving a class on how to beg people who had already got you money (most of the people in the room had gotten major contributions for autism speaks) could pretend to be part of the process of making this massive money suck into something good…it won’t ever be good unless severe changes are made).  I spoke with people at my table about outreach for the kids and families educating them and the public on why these kids have a chance at having a great life and becoming productive tax payers…crickets…and more crickets.  I stood up and in front of more than 70 people point blank asked why NONE of my requests for grant money for the at cost 0% admin programs that were helping 100’s and 100’s of Northern Virginia families were denied and the answer seemed to me to be that we did not have a professional grant writer!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!  If we had a professional grant writer would that not tip you off that this organization is already being funded and likely spending money on people to work on something we would not want to use money for…STAFF!

Okay I could scream all day about Autism Speaks or Autism Shuts Up as I like to think of them but here is what my suggestions were to them ….none of which they even bothered to email me back about as they have no intentions to listen just pay lip service and maybe my name listed at their function to my chagrin!

1. Put someone who actually has autism on your board!  Not your board of advisory and NOT somebody who pays lip service!  People in the community know who actually would advocate who the rights of people like them and who is weak and not interested in being anything more than a puppet in a public place!

2. On your pay pal page which you rake in millions of dollars that are not given to groups like POAC give people a choice between            Research    Family Services       and Political Advocacy.         I can not tell you how many shocked people have given money to you stupidly thinking it would actually help their families (aunts, uncles, grandparents, friends, co-worker and the like) who have NO idea what you are spending the billions on!  Yes, they should know but assumptions are what is currently funding your group and that is wrong!

3. Give you board a nice fat pay cut!  They in the eyes of ME who have been in the trenches in the autism community for 6 years have done NOTHING (except the 100 first day manual…a WAY to expensively produced but lightly useful guide).  They should take a cut because if you care about this issue you are not doing it for love of money but love of change and success!  I did it for 6 years for FREE and happily to watch metamorphosis so I think funds should be returned for your lack of change in the community.

4. Do lie to people about their being all these paths to success for kids on the spectrum!  Really if it is not scientifically proven by  peer reviewed groups it should not be happening!  You give parents credit for not being completely devastated and easily suggestible to the magic pill of which there is NONE.   If you supplant in their brains that nothing is better than something that could likely hurt their guinea pigs…I mean kids perhaps they will think twice before doing something untested?  ABA/VB has been clinically proven and should be what you actually list!

5. If your going to put the word out about autism don’t do it with the pity fest that I Am Autism was and better yet don’t tell me the excuse actually emailed to me “One of the writers of I Am Autism is a father with a child on the spectrum and he has a Grammy”  you sound so stupid with staffer like that!  I know plenty of dad’s with kids on the spectrum who SHOULD NOT be allowed to represent your organization or even POAC (Scott) and their are I am sure 100’s of Grammy winners who should also NOT represent autism….the combination of the two though spoke volumes about how much you care about our kids and our families not be mention the lies in that video!  By the way I AM NOT BANKRUPT, DIVORCING MY HUSBAND, DEPRESSED AND I DO NOT CRY EVERY NIGHT because of my son should any of those things happen it will be based on MY CHOICES NOT HIS DIAGNOSIS!  I am praying he never see’s your CRAP ASS video as it would make him feel like a SACK OF SHIT and I HATE YOU for producing something that evil and full of lies!  Teens and adults with autism might actually kill themselves because of your lies!  I have a girl friend with autism who felt for a long time that her families was truly ruined by her autism and it is EVIL to confirm those lies to people who might actually believe them!  YOU BASTARDS!

6.  Better time spend might be on things like telling the public to STOP allowing their poorly educated kids (by the parents…the school should not be responsible for raising your child) to ignore or better treat my child like an idiot!  I don’t tell Bird to ignore other children because they are badly raised, ill mannered, nonathletic, lacking a loving nature or really sweet disposition, bad a math, no where near as smart (he passed all his SOL’s this year but did not say a word until age 4! how many other kids had that to hinder them!)  or frankly not even close to being as good looking.  Many children with autism have no language, little language, not consistently great language but ALL OF THEM have feelings and deserve respect!  WHERE IS THE VIDEO ASKING FOR TOLERANCE AUTISM SPEAKS??????????  All that money and nothing about respect…tisk tisk.

Okay, now that this is off my plate I can continue with my Sunday and move back into my world and further away from autism world a place I found extremely frustrating and full of shear moments of stress and hate….and love and success but my family and I are all the happier that I have moved on.


2 Responses to Autism Speaks-NOT Autism shuts up!

  1. pvbiamomma says:

    I still hate Autism Speaks and noticed this post was getting a lot of reads in the last month so I thought I would restate they still suck!

  2. jon shestack says:

    yeah I think so too but for a totally different set of reasons

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