Written By: bluebellscreams
Most everyone I know has heard of Autism Speaks. Their message is prominent. Autism is an epidemic. Autism is a burden. Autism needs to be cured. This is the message of Autism Speaks’ and is precisely the reason why I speak out against them. Because autism does not mean what Autism Speaks is telling you it means.
Until I was facing the possibility of my son’s diagnosis, I didn’t really know much about autism. While researching to learn more for my son, I came to two important conclusions. The first was that autism needs no cure; I knew that “curing” my son would mean changing who he was. The second conclusion I came to was that I am autistic as well.
In the end, I received an official diagnosis shortly before my son. And with those diagnoses came a lot of emotions, the two biggest of which were relief and fear. I was overwhelmingly relieved to finally have a name for who I was, for why I was different, for the struggles I’ve been through, for why some things were so hard for me when they seemed so easy for everyone else. To finally realize I wasn’t broken, just different. I finally learned to love and accept my whole self, thanks to my diagnosis.
But I was also afraid. Afraid for my son, afraid that he would grow up feeling the way I had. And the more research I did, the more afraid I became. Because I never want my son to feel like he’s a burden to me, or to feel like he’s worth less than everyone else. I can tell him and show him over and over again how amazing he is, how perfect he is, how much I love him for every bit of who he is-which means loving him for his autism, not in spite of it. But how can I protect him from the rest of the world? How can I protect him from the messages of groups like Autism Speaks and the individuals that believe and spread that message? How do I help him when everyone is “lighting it up blue” and he has to hear over and over again the horrible lies they tell about him? How do I make that better for him? The only thing I can do is stand up, speak out, and fight. And so that’s what I do.
The general public has an inaccurate view of what Autism is and what Autism looks like. The fact is that autism doesn’t look like any one thing. There is not a uniform set of characteristics that applies universally to everyone with autism. We are not what you see on TV, we are not what the media and organizations like Autism Speaks tells you we are. No two autistic people are alike, just as no two neurotypical people are alike. Some of us have symptoms that others don’t. Those of us with the same symptoms will experience them differently and on different levels.
Being autistic means that I am different than you. Not better, not worse-just different. It means that I see things differently, feel things differently, experience things differently.
Autism does make some things harder, this is true. I have trouble with social interactions due to extreme anxiety, difficulty understanding social “norms,” and difficulties with some forms of communication. I tend to take things literally and often miss jokes and sarcasm. My senses get very easily overloaded. I am unable to maintain a job. I need structure and routine. I lose things all the time and have difficulty focusing on things. I have compulsions and repetitive behaviors. I am never on time for anything. I sometimes lose my words, I get overwhelmed easily, and I sometimes melt down or shut down. I often have trouble identifying and expressing my emotions.
But there are so many positive aspects as well. For me, being autistic also means that I am intelligent, that I am honest, that I am persistent, that I am loyal. I think about things logically and rationally. I have intense interests which I love and which make me extremely happy. I can solve complex math equations in my head, I am a good writer, I am good with languages. I can see the beauty in the small details that other people miss, I can see the patterns and connecting threads in things around me, I can read a piece of literature and see the subtle meanings and metaphors that tie everything together so beautifully that I feel it all the way to the depths of my soul. I find joy in the simplest of things and I experience happiness on a level you will probably never know.
This is what autism means for me. This is the part that makes it worth it. This is what makes me genuinely happy to be autistic. That I get to see and feel things in a way that most people don’t. That’s not a burden, that’s not something to pity. It’s something to be celebrated.
My son is an extremely happy little boy. He finds joy in everything and wants nothing more than to share that joy with everyone around him. He’s intelligent, he’s witty, he’s curious and precocious, he talks a mile a minute, he loves everyone he meets the second he meets them, he will walk up to and hug complete strangers. He’s also extremely emotional, has sensory issues, has meltdowns almost daily, has trouble focusing and paying attention in school, doesn’t really know how to handle emotions like anger and fear, has absolutely no “social skills” whatsoever, and needs logic and order and for everything to make sense. And I love every bit of him, the whole package. It’s all tied up together. Without his extreme anger, he wouldn’t have his extreme joy. Without his need for the world to make sense, he wouldn’t have his curiosity. You can’t take away the “bad” bits and keep the “good” ones. It doesn’t work that way.
Being autistic most certainly does not mean that we are useless or that we are burdens. It does not mean that we lack empathy. It does not mean that there is something wrong with us. It does not mean that our lives have less value than yours. It does not mean that we cannot achieve success in life. It does not mean that we are less than you.
But that’s what Autism Speaks is telling you it means.
This is unfortunate because Autism Speaks is indeed speaking. They are speaking over the voices of autistic individuals, and they’re doing it loudly. They are the most well-known and well-funded autism related organization in North America. They put millions of dollars into campaigns designed to make you pity and fear us. They believe that autism is a “global health crisis.” They believe that we are burdens on our friends, family, and society. They believe that we need to be cured. They believe that the rest of my family is “not living” because of me and my son. They believe that we are incapable of speaking for ourselves. They believe that autism “has taken our children away.” Autism Speaks would have you believe that I and my son are nothing more than part of an epidemic that needs to be eradicated.
None of that is true. Autism is not something I have, it’s something I am. It did not “take me away” from who I really am. Autism is me; you cannot separate me from my autism. It affects the way I think, the way I see things, and the way I feel things-both physically and emotionally. If you could somehow take away my autism, you would be completely changing my personality, turning me into a completely different person. And I happen to like who I am.
I am not the only person who feels this way. Not by far. Autistic individuals are, and have been, speaking out against Autism Speaks and their actions, but they refuse to listen. Nearly half of their money goes to research that attempts to find the causes of autism, prevent it, and “cure” it. A very large portion goes to fundraising practices that purposely present a distorted, inaccurate, and highly negative view of autism, while completely ignoring the many positive aspects of being autistic. A measly amount goes to family services meant to help autistics and their families. This is in spite of the fact that the majority of their highly propagandized fundraising campaigns erroneously depict us as horrible burdens to our families-families that Autism Speaks claims are in great need of their services.
Autism Speaks treats autism solely as a childhood disorder, focusing on the hyperbolized experiences of the families of these children instead of on the actual experiences of the children themselves. They ignore the fact that autistic children grow up to be autistic adults. They ignore the voices of these adults-those of us who actually live with autism, those of us who actually know what it means to be autistic. They ignore us when we say we do not want a cure. They ignore us when we say we have a right to exist just as we are. They ignore us when we ask them to change their mission to actually provide support to autistics. They ignore us when we ask them to show people what autism is really like.
Quite simply, Autism Speaks is not listening to the very people it claims to be helping.
I will continue to speak out against Autism Speaks, to boycott anyone who helps fund this organization, and to try to educate people about what autism really is. I do this for myself, for my son, and for everyone out there like us. Because we are worthy, because we matter, and because we should be proud of who we are.