Thursday, March 28, 2013

Autism Speaks, I Want to Say

Think what you are doing to our mothers.

Perhaps you believe you must use the hurtful, bigoted rhetoric to cause the panic to raise the money.  Perhaps you think you have to make videos about us without ever really showing us using our actual voices, our actual use of AAC as it actually is, or people will get the idea we're not such a terrible burden or tsunami or whatever the the trigger word of the age seems to be.  I don't know what you're thinking, but I know what you're doing, and I know it isn't good.

This morning I saw a tired, pained mother say she "had to be pro-Autism Speaks" even though she disagreed with your tactics of this nature, because you lobby for services for her family, and she had "nowhere else to turn".  I looked into this, but didn't have the heart to tell her this thing that you already know, that you spent $460K on lobbying last year, a mere drop out of the millions, millions you raise and carry as assets (yes, I can read a financial report) and much less than you spend on your salaries, which are so high you don't easily make it in to count as a non-profit in the USA any more and have to explain the exact rules to your stakeholders in well-crafted wordsmithing so they don't get skittish.

I didn't have the heart to tell her that of that wee amount that goes to lobbying, not all of it or even most of it seemed from the government reports to be having anything to do with services for her family.  A lot of it seemed to do with "science" again....  How is it going to help this woman's family right now for you to figure out how her child could have been prevented?  It isn't, and you know it.

You will be hearing from a lot of us Autistics today in this Autism Speaks, I Want To Say flashblog, if you listen at all, about what you are doing to us.  But I am very clear on the fact that you do not care what you do to us.  Still I wonder: do you care what you are doing to our mothers?  Scaring them and taking their money and saying you will help them get needed services when what you are really doing is trying to prevent more of their families from happening, and making a very handsome living while you are at it: does this sound decent to you?

This is our mothers you are doing these things to.  Our mothers and fathers.  Are there no mirrors in your house?


  1. I love you, Ib. And thank you.

  2. Their science scares me. All the underlying reasons are to find a cause to prevent and eradicate autism.

  3. ((Ibby)) You are spectacular!

  4. I do not know about services (the services I get are, now, after years of fighting for them for my son, and near disaster, reasonable): what is the issue is the rejection of my and my child with Autism (well very severe Sensory Integration Disorder and all the soft markers for ASD and ADHD and severe motor issues too) by church, friends and even family. My son's behaviour can be unpredictable, difficult to manage and yes, toilet training is still an issue at 10: but that that is no reason to reject a person and isolate and disregard that child's parents within society.

    1. Anonymous, you are absolutely right about that!! All involved should be ashamed of themselves.

      I take it from your spelling of 'behaviour' you are from somewhere in the Commonwealth? I do have connections in several places and if you'd like email me through this site or to DM me on Twitter, I gather that's very private (@tinygracenotes, be sure you use the DM feature instead of regular tweeting though), and I could put you in touch maybe with someone near where you are.

      What you're talking about is a sin and a crime and a shame and what the fearmongers have done by deliberately messing with public perception can only be undone by person-to-person networks of caring people, I think. Thanks for writing and I hope you write again.

      Also, if you don't mind to put it out there where you are, (you know, "ish," so you still feel safe,) then you can write back here and the awesome readers on here can network for you better than I can. You deserve an excellent community of support.

  5. As a scientist, I cannot support an organization like Autism Speaks, when its scientific chief makes statements bearing little resemblance to the true meaning of science.

    Science is about knowledge, not propaganda. True scientific investigations take great pains in defining hypotheses because how we define what we're looking for, is how we ensure that we'll likely find it.

    Want to define autism with a disease hypothesis? You'll find it.

  6. Beautifully and very well written. Thank you - you've summed up the issues quite nicely.