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Autism Speaks Does Not Speak For Us – THIS is Autism

This is dedicated to Autism Speaks co-founder, Suzanne Wright, in response to her call for action today. I will not provide the link to the post.

My son, Connor, is 8-years-old. He gets dressed, brushes his teeth, and ties his shoes independently.

THIS IS AUTISM

Connor tells us he loves us every single day, and he looks us in the eyes when he does it.

THIS IS AUTISM

Connor played on a soccer team last spring. He also loves to ride his bike, without training wheels.

THIS IS AUTISM

Connor sleeps through the night (mostly), is toilet-trained, and asks questions about everything he can think of.

THIS IS AUTISM

Connor loves to tell jokes and do silly dances. He lives to make people laugh.

THIS IS AUTISM

Connor’s teacher sent me this in an email yesterday: “I was really proud of him at the end of the day when he witnessed another student being unkind, he told the student he should apologize. I was like WHOA!”

THIS IS AUTISM

Connor saw some brief news footage the other day of the typhoon in the Philippines. He asked if it was really happening, and I told him it was. Then he asked what we could do to help those people.

THIS IS AUTISM

Connor loves to help people. He holds doors open for others whenever he enters a building. He has said he’d like to be a police officer someday.

THIS IS AUTISM

This is autism.

This is autism.

You don’t speak for us. Only we can speak for ourselves, so hear my words: Autism is not a tragedy. The only tragedy here is the way you perpetuate a negative stereotype about autism.

We do NOT support Autism Speaks or their portrayal of autistic individuals.

Maybe it’s time you learned what autism really is.

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About Flannery

Kid, husband, dogs, my mother, full-time job, maximum stress, minimal relaxation...sooner or later I had to vent. AND we moved from California to Texas. I could start a whole other blog about that.

21 responses »

  1. I am very heartened to see responses like yours, and that I’m not the only one to say “AUTISM IS WHAT??” with every new Autism Speaks video or radio ad. My little 3 year old Dmitry is non-verbal, loves hugs, is completely non-violent, doesn’t bite or pull hair or hit, and laughs every day. I wrote a response as well: My Son is Not Lost

    http://dmitrylaughs.wordpress.com/2013/11/12/my-son-is-not-lost/

    I don’t hold out any real hope that AS will start to listen to us, since they simply earn too much money from the pity crowd outside the Autism Community, and they aren’t likely to deviate from what works. They’ll continue to represent our children as little monsters as long as it stays effective. I will continue to share yours and A Diary Of A Mom’s here: http://adiaryofamom.wordpress.com/2013/11/12/no-more-a-letter-to-suzanne-wright/ and hope that at least some people may “get it”.

    After reading your pithy, effective post I really feel like we’re on the same wavelength here.

    Reply
  2. Reblogged this on Dmitry Laughs and commented:
    Another great great article: THIS IS AUTISM

    Reply
  3. You are right. No one can speak for our children except for us and them. We are the people who actually spend time with them every day and know who they are and see the amazing abilities they have. No one child is the same and none of them should be seen as a tragedy. My son is not a tragedy. He is not a ‘mistake’ and he is not sick. He is different and that is perfectly okay.

    Reply
  4. Pingback: Crisis, despair, and everything else wrong with Autism Speaks’ “Call for Action.” | Autism & Oughtisms

  5. Fantastic Flannery, you made the point in a very real and beautiful way.

    Reply
  6. Pingback: Autism Speaks is not and has never been listening despite their slogan | Autism from a Father's Point of View

  7. Pingback: My Son is Not Lost | Dmitry Laughs

  8. margaret bernhard

    I believe you and the other mother you mention both have children who have been given the diagnosis of autism. Unfortunately that term is used for children whose behavior, skills and outcome are very different. Some who bear that label are profoundly affected, and some are only mildly so.
    When the diagnosis which had applied to only a few severely affected was given to a large number of children, it resulted in a very disparate group of children with that label. The problem is with the label, not the mothers and not the children, but a label that applies to very milkly autistic and profoundly autistic. We need a diagnosis or diagnoses that can recognize the different levels of severity between children who may behave very differently despite both being called “autistic”.

    Thank you, I am an MD who worked with the strictly diagnosed Autistic in the 70’s who thinks we need a better diagnosis for all these children.

    Reply
    • I agree that there can be significant differences between one autistic and another. The problem is with an organization that doesn’t make that distinction in any way. They claim to represent autism, when clearly they are not representing a very large number of autistic individuals. And so their message of tragedy is the message the general public hears and attributes to all autistic people.

      Reply
    • The other issue is that autistics change over time. My 16 year old has always been empathic, perhaps too much so, did not speak until age 4, and is only recently self motivated and reliable at some personal cares . At 3, he might have resembled the Autism Speaks description or yours of more severely affected. Fortunately, we did not listen to the doctors and presumed competence. He will be beginning pre-employment experiences in a local business next year and is learning far beyond what the MDs told us to expect given his visualized brain structure. My husband still cannot tie his shoes without a great deal of challenge, and is a valued employee working full time for a multinational corporation. Several of my adult children all with ASD issues are working and graduated from University with honors. One works with autistic and EBD kids. One who was given an MR/related/probable ADHD diagnosis pre-1994, and who spun and flapped a lot, is a department head in HR at a corporation which knows none of this. I have my challenges but am a gifted photographer. Takes all kinds, and Auti$m $peak$ speaks for one of us.

      Reply
    • I was diagnosed in the 70s as a child when the diagnosis didn’t technically exist in North America but when you managed to graduate from speech and people were sure you were educable they would declare you residual. I actually agree that is applied too broadly but as the single greatest indicator of outcome over a life time is whether or not mental retardation is actually present perhaps people should be more forthright there,

      You are a doctor so you should know that the DSM has axis for severity, speech and cognitive functioning and that other developmental disabilities also have the same range of functioning. They’ve moved away from a lot of diagnoses because in individuals who developed speech and did not have a an intellectual disability people experts could not which tell diagnosis they had..

      I don’t think a return to the 70s model where parents were urged to put a child as defective as me away and start again is the answer. To this day my own functioning ability varies a lot but no one has ever doubted my autism. If you met me on a nice, structured stress free would you think something had changed over my lifetime and I was no longer autistic? I know from experience the notion that it could be residual was destructive as someone could decide you were that in the window where what was expected of you met your capacity and someone else would come along and say otherwise. Confusion reigned..

      I get along well with autistics at all point in the spectrum. Parents are often shocked at the instantbond someone currently considered much more severe than I am (although I have a report done a few months ago where the same dang page lists me as high functioning in one place and extremely low in another so my opinion of doctors and psychologists in this field is not high) Even in those that are unquestionably permanently challenged as far as their mental ability goes there is an overlap in the core areas so why would we return to a new model just months after arriving at one that recognized that?

      The 70s were not the good old days of autism. My mother was so ashamed of my having it that it’s name was never spoken. If my pediatric chart hadn’t been requested by my university health services when I was 18 I may have spent a lifetime wondering if I imagined it all so vehement was the denial.

      Reply
  9. Excellent piece. Like you, I was angered and saddened by Ms. Wright’s op-ed. Here’s my take. http://pucksandpuzzlepieces.com/2013/11/13/living-not-existing/

    Reply
  10. Terry Ann Williams

    You are so right. I did not see the post but if one thinks of Autism as a “tragedy” then it might be one in your world. Not so in mine. Maybe someone doesn’t understand the “spectrum”?!!?

    Reply
  11. As a mom and an advocate I admittedly was on the proverbial fence about AS until yesterday. Their association to the JRC sickens me. How can they claim to be FOR the very people that this “center” abuses (according to one post 6 people died in their “care.”)

    I don’t like their one dimensional view of autism either, however I do understand that this is a spectrum disorder- there are people out there who are much more severely effected and who DO suffer. As a community we can’t claim to be united if the only people we identify ourselves with are the ones like us. Not all cases are severe- and not all are as high functioning as your son and my daughter.

    The bottom line is that autism is not one dimensional. It is neither all roses, nor all thorns. Some of us are luckier than others. Deep down we know it even if we won’t admit it.

    AutismSpeaks doesn’t portray your son or my daughter in their media campaigns. I resent that they claim to when they clearly only speak about those that will inspire the most donations to pad their pockets.

    Why I was on the fence can be found here:

    http://vermontautismnetwork.wordpress.com/2013/11/13/diving-into-the-shark-tank/

    We have to keep writing, keep talking, keep fighting. THIS is what autism community is all about.

    ~Jess

    Reply
  12. Pingback: Autism Speaks doesn’t speak for me | aspergal

  13. Pingback: This is Autism in the Philippines | Autistic BigBro

  14. Pingback: Why I Am Against Autism Speaks, and Why It Matters | Autistic BigBro

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