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Autism Speaks does not speak for my son.

Autism Speaks is calling for a “national plan” in a piece written by Suzanne Wright on the organization’s home page. I’ve been disillusioned with Autism Speaks for some time now, mostly because they spent so much time and money peddling their wish for a cure.  The “cure” narrative bothers me. It treats my son’s neurology as a disease, not the way he was born. I’m all for any advances that will help him function better in his daily life- it’s why we have given him speech and occupational therapy since he was 14 months old. It’s why we get him extra help during the school day so that he can accomplish his goals. But we do things his way. We seek to understand him and let him work through academics using his unique and wonderful neurology. A cure seeks to change who he is- and we LOVE who he is.

In her article, Mrs. Wright went much further than the whole cure issue. She dehumanized my child and my friends who have autism. She begins the article talking about what the nation would do if we woke in the morning to find that 3 million of our nation’s children went missing. How we’d all freak the hell out and look for them. Then she said that’s exactly what is going on for our children. They’re missing. And we’re not doing anything about it.

Ahem? My son is not missing.

She goes on to talk about how hard the lives are of families with children with autism by saying, “These families are not living. They are existing. ” We’re zombies? Sure, there are days where I don’t get sleep and I feel like a zombie, but that doesn’t mean my life is devoid of beauty, joy, laughter and LIFE.  We aren’t existing. We are living a life less ordinary. Hard? Sure. But we get to experience a range of emotions that I would not trade for anything. I’ve felt sorrow beyond any I’ve known and in contrast, I’ve felt joy that I will never be writer enough to put into words. I’m REALLY living.

Autism Speaks Does Not Speak For Me Or My Son

She goes on, “This is autism. Life is lived moment-to-moment.  In anticipation of the child’s next move.  In despair.  In fear of the future.”

At this point, I’m really struggling to not use bad words. This picture she paints is NOT AT ALL autism. How dare she? It’s not a life full of despair and fear.You’d think she’d know a thing or two about autism by being the co-founder of Autism Speaks.  This takes me to the other reason I’ve become disillusioned with Autism Speaks: They speak for people with autism rather than letting autistic people speak for themselves. The infantize autism in almost everything they do. The whole piece was about children. About how hard it is having a child with autism, how costly, and how we’re not ready for a future of 3 million autistic people who can’t care for themselves (which completely discounts the fact that a great many people with autism are completely self sufficient.)   The piece says nothing of how it feels to be a person with autism in a world that is not accepting. In a nation where the co-founder of Autism Speaks itself writes something so completely awful about people with autism.

At the end of her article, she talks about the message we’re sending to our kids. If I could ask Mrs. Wright anything it would be this, “What message do you think my son would read in your words? How would it make him feel as an autistic individual? What message are you sending to children with autism?”

The whole article was about how autism is ruining lives, tearing families apart and costing the nation too much money. It talks about everything having to do with autism besides the autistic person themselves. It does not seek for understanding and acceptance of people with autism and it does not say a damn thing about helping adults on the spectrum.   Autism Speaks presumes to know what everyone with autism needs, and in this piece she paints every autistic person as being one that will never function in society, is missing, and is causing their families great sorrow and pain.

It’s just not true. Beyond that, it’s hurtful. She does not speak for me as a mother of a child with autism and the organization itself absolutely does not speak for my son.

 

 

26 thoughts on “Autism Speaks does not speak for my son.

    1. I could not agree more. I wanted a bumper sticker to show my support of my son and it was SO HARD to find one that was not puzzle piece/Autism Speaks affiliated! I finally found a great one that said “Someone with autism makes me very proud every day”.

      I also have to add how ill-fitting their organization’s name is – “Autism Speaks”…if autism speaks this organization seems to want to do everything it can to “cure” and silence it.

  1. I often wonder what beautiful parts of my boys I would lose if they were “cured”. They are precious just the way they are. Life is not simple, never boring, and they certainly do not make me wish they were different. I often wish the world was different for them but I never wish they were different. That would be wishing them away.

  2. I love this. Amen. I may sound harsh, but she comes across as a rich woman whose grandchild didn’t fit her preconceived notions of how grandchildren should be, and she is having a hissy fit about it. I abhor her word choice. It’s awful.

  3. I am envious of those for whom she does not speak.

    My 12-year old son will need 24-hour a day care until the day he dies. He doesn’t speak, is self-injurious and aggressive and has zero sense of safety. Often at 3:30 am. I am just lucky that he is somewhat potty-trained.

    This is the unvarnished part of the spectrum that gets forgotten — or hidden at home while higher functioning kids are able to do Special Olympics. “Unique and wonderful” aren’t words that come to mind when my other kids are terrified. Or embarrassed when their almost-teenage big brother shows up naked in the kitchen with poop all over him when they have a friend over.

    So yes, she speaks for me. That is my truth.

    1. Yes, Cathy, there are a lot of people out there that she does speak for and I would probably count myself in that category. Maybe not all families are “existing” but quite a lot are. Some days are very tough and those individuals that will require life long care (and I’m not talking assisted living) NEED a cure. So while I will never require anyone to take a cure, I am still hoping for one quite hard.

      1. Cathy, I hope that my post did not cause you any hurt. I surely did not mean it as such. If so, I’m sorry.

        My issue isn’t that she doesn’t speak for some families out there- I knew in writing it that there are some families that are embodied in the words that she wrote. My issue is that she’s painting autism with a broad brush- she repeatedly states “this is autism.” It’s not autism for everyone.

        On this blog, I speak for myself. I speak for what I know of my children, but it is always from my point of view as their mother. In this, I was careful to say she does not speak for me or my friends who have autism, because this is not what we see.

        You’re seeing something very different. Your point of view is the same as mine- as a mother with a child on the spectrum- though your experience is very different. You have the right to agree with her and I absolutely do not think where you’re coming from is wrong.

    2. You assume those who say she doesn’t speak for them don’t share your same or very similar world. But we can advocate for better services for our children without destroying them. We can demand help without demeaning them. It may be your truth but would you look at your son and tell him he is destroying your family? That he is a burden? That you wished he was dead? I pray not- but Autism Speaks has done just that countless times.

      I would hope you would shield him, protect him, and love him as I’m sure you do. Nonverbal doesn’t not mean cannot feel- which you are probably well aware. There are plenty of adults and children in your son’s shoes who have expressed the complexity of the person they are on the inside, someday your son may be able to (if he doesn’t already), until that time we must presume competence for him and all those like him. Autism Speaks rhetoric makes it dangerous for those among us who have no voice. My son at one time had no voice, now he does for which I’m thankful beyond expression, but it is on his behalf I stand against Autism Speaks. I vowed to be his advocate until such time he was able to advocate for himself, if he never can, than it is my job as his parent to defend him and those like him. I vowed never allow the negativity to extinguish his humanity- we parents are the front line reminding the world our children matter. Autism Speaks does the opposite.

    3. Cathy,
      I wanted to think on your response before I replied. I am wondering if maybe by painting this picture as what Autism is does you more of a disservice than anyone else. We all need to advocate for our kids but we do not need to all speak for them and help them function to the extent that you and your family does. We need to define the difference between high and low functioning so that the services needed for all children on the spectrum are fairly distributed. I don’t know a lot about the system in America but I do know it is not as fair as the Australian system. I wish you all the best and hope you can get what you need for your son and your family.

  4. Amen, sister! Preach it!! I agree with all you said and I’m so angry right now I can’t go read the article. My 11 year old autistic son has brought so much enrichment to our lives. He is an aspie and will go to college, get a job, most likely marry and have kids. He will probably never have a large social circle, but he’s learned to make a few true friends. His life is full. He’s on student council, plays in the jazz band (audition only) and enjoys youth group. He may still wave pretend light sabers and the youth group kids ignore it while he does, but they don’t ostracize him, they don’t make fun of him, and he sure isn’t ‘missing’ to them. He’s a friend. He might be a different friend, but they look out for him. They love him.

    And I agree–I’m sick and tired of everyone speaking FOR the person with autism instead of listening TO the person with autism. Nathan has ideas…especially about his life. And he has the right to make decisions for himself as he grows. And someday he will be an adult with autism and that’s when this country gets really scary. We put everything into young children with autism…and they grow up into adults. But adults aren’t cute and cuddly and don’t raise money so we ignore them.

    Love what you had to say!!

  5. Cathy, the problem as I see it is that this view is the only view getting out there. There making a national plan about autism right now, no autistics seem to be involved. While it is true that you are being spoken for anytime I try to speak my for myself my voice is drowned out. And when you see autism as a tragedy you seem autistics as something to be pitied not to be treated as an equal… That makes it pretty hard to get a real job, something most autistics see strive for. In other words great, you got your voice, will I ever be able to use mine?

  6. I feel like Autism Speaks has this old-fashioned image of autism, of a little kid sitting in an empty room in an institution somewhere, rocking back and forth. Like, “there is a real child trapped in there!” But the child with autism IS the real child! People with autism have spirits, emotions, thoughts, likes and dislikes, joy and pain, and they feel love for their friends and family members just like everyone else. They don’t need rescuing… they just need understanding!

  7. Exactly my thoughts. In fact, “My son is not missing” was very close to the title I chose for my response: “My Son Is Not Lost.”

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

    I was pretty long-suffering in the past with Autism Speaks because they struck me as a general “awareness”-style charity, and I’m all for awareness. But this is just the hay bale that broke the camel’s back.

    And then when I dig a little deeper into their ad campaigns, I learn that autism is all about DIVORCE. BANKRUPTCY. SUICIDE. DESPAIR. DIABETES AND CHILDHOOD AIDS. It’s ridiculous and beyond the pale.

    This tripe is exactly what CAUSES mothers and fathers to feel sick, to despair when they first get their diagnosis. They think, because of “charities” like Autism Speaks, that their lives have come to an end.

    HOGWASH. That’s the only word I can say without getting my language a little too salty.

  8. Exactly. That woman does not and SHOULD NEVER speak for any of us as parents. That organization do not speak for our children. It’s wrong. Just wrong. And demonizes our children and makes us all look like emotional wrecks.

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  10. She speaks for me, as much as those of you with higher functioning children wish children like mine did not exist. I am furious with selfish parents like you who demean and minimalize children like mine, as if there is something horrible and shameful about them. Instead of crapping all over families like mine, get on your knees and kiss the ground in thanksgiving that you don’t suffer the way our family suffers. I’m sick of hateful crap from monsters like you. It’s bad enough my son is non verbal, but you dare try to silence parents like me? Who do you think you are? What right do you have to say things like this? You’re sick, and it is a shame you are raising a child, because the last thing the world needs is more selfish bullies like you.

    1. Look at my post above. You are not being silenced. No one is trying to silence you. We just think it is wrong that Autism Speaks has a conference where there is 1 speaker with autism, out of the dozens of speakers they have. We think it is wrong that Wright, and yourself if she speaks for you, get to portray autism as one thing, when you yourself admit it is many. We think it is wrong that you can pretend we aren’t real autistics, yet you use us in your numbers all the time, otherwise you wouldn’t have this “epidemic” on your hands. That is what I think is wrong anyway.

    2. Wow! Ann Marie, what a nasty, nasty person you are today! Someone needs to have some serious work on her social skills. I too have a severely challenged child with autism, and he will need my care for the rest of his life. So I totally understand your pain and how voices like ours need to be heard. I understand how hard life is when you look at the breadth and scope and reality that the day we die will be the first break we get from our severely challenged child. And I agree, Wright’s words were crystal clear in the describing how our lives are spent just existing. But we aren’t just simply existing. We are complicated in existing, and in the middle of all of that, life still happens for us. And despite the challenges that you or I face, life is still happening for the world around us. Wright’s words only speak for a small fraction of the millions that are facing autism. Wright’s words are a very poor reflection of the real world of autism, the world of autism that includes adults who are able to function and live out their lives fully, the world of autism that includes children that are able to go to school and make friends and have their own proud victories and achievements. Autism is not a disease and individuals with autism are not all suffering with autism. Yes, there are families like yours and mine that are; but to assume that ALL families that have autism are suffering is wrong. If Wright and Autism Speaks wanted to make a clearer statement about autism, there should have been something about all autism, and not only those who are suffering. The blanket statement that we are all in the same boat is where the offense comes from. The blog post you just read is someone’s personal blog. She is entitled to write what she wants to write, and whether people take offense at her thoughts and words is not her problem. She doesn’t owe it to you to include you in her thoughts. Unlike Wright, this writer was speaking about her own personal life; Wright was speaking on behalf of ALL with autism.

    3. Oh my god, it’s kibblet!! Hi kibblet!! I haven’t seen you since you flipped your fucking lid and went ballistic on me over on Facebook, and then blocked me!! We used to be friends, remember? I remember how we used to chat on twitter and we were friends. I actually liked you, a lot. Y’know, until that whole Facebook ugliness happened. I see you haven’t lost your trademark blend of psychotic irrationality projected onto internet strangers that you’ve never met before. That’s good to know, actually, that no matter what the day brings, we can always hang onto the fact that Anne Marie Hake Hughes remains a miserable cunt who hates her life and the world and likes to freak out at people on the internet in order to make herself feel just a tiny bit better about herself. Sad that it obviously never works, but still… at least you keep trying. And that’s the part that makes me feel so proud to have once been your friend 🙂

      Anyway, nice to see you again, kibblet. I’m sorry your life sucks so much but I’m starting to think that karma is at work here. Seriously. Think about it.

  11. Lexi-gosh, I love this post. My brother is Aspie and he has come so, so far! When he was six, people worried he’d always want to play alone or not speak. He is now graduating high school in 2014 and is a “gentle giant” to his peers. He is still black and white but has a zest I didn’t know if I’d ever see. He’s come a long way!

    AS does not speak for my family or me. I am also a sped teacher and see all walks of like of the spectrum. I met twins Thursday who were both non-verbal and Autistic. Their life is different compared to my path. However, their parents are choosing it. They are only eight and of course, their needs are different than my brother’s. However, no one has written a playbook for them.

    I think it’s sad people are attacking you just because you’ve stated your opinion. Don’t they know comments are written online and can be searched/found? I didn’t know people could be so cruel until I read the comments.

    Keep doing what you’re doing. Laugh off the naysayers & do what’s best for your family!

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