Tomorrow is World Autism Awareness Day and thus I am
crawling out of my nest of packing boxes and paint cans and special education
paperwork to write to anyone who I can get to take the time to read about the
driving force in my life: raising autism awareness.
Last year, I wrote a blog for Autism Awareness (you can find it here: http://megcentric.blogspot.com/2012/04/rylan-awareness.html) and it is still by far my most-read post, which is frankly pretty awesome. I got a lot of the basics out in that post, so I won’t repeat them here, but I will dive right into what continues to both bother and motivate me about the lack of public autism awareness: the dehumanization of autistic individuals.
I know it sounds heavy. Stick with me, okay! I promise I’m not going to lecture y’all!
Here’s what I mean: I imagine there are millions of people who could recite the “1 in 88” statistic, and even know the “red flags of autism” (lack of eye contact, hand flapping and other repetitive motions, lack of appropriate social smiling and laughing, utter dependence on routines, etc.). The autism awareness campaign has been heavily focused on early detection so far. This approach is aimed at making folks aware that autism exists, that it’s common and what they should look for in their own children if they’re concerned about autism. So, in that respect, it’s great.
What I hate about it, though, is that it reduces a dynamic and varied population of people to a list of rather scary-sounding “symptoms”. As a society, we know the “whats” of autism, but not the “whos”. I’m sure that all awareness campaigns struggle with this same issue. There is vitally important health or behavioral information to impart and so that takes priority. It’s also much easier to tell people their risk of having a child with Down’s syndrome, or a congenital heart defect, or autism than it is to tell them what it’s like to have Down’s Syndrome or to be autistic. I think the autism awareness campaign has been particularly faceless and personality-less, though, and that troubles me.
Presenting only the faceless “cold, hard facts” is so particularly harmful in the case of autism because autism, as described in a clinical manner, sounds terrifying and foreign to a neurotypical person. The list of “red flags” describes an individual who doesn’t hold meaningful conversations, smile or laugh, who throws mysterious and troubling tantrums over changes in routine, who is completely unable to cope with activities like getting their hair cut or nails trimmed or being bathed, who makes odd hand motions constantly and stares at lights. This person does not sound like someone any of us would want to spend time with. This person sounds miserable and closed-off and out of control.
These symptoms are, of course, only half of the story, but thanks to “red flags” awareness, they’re the half that people without personal experience with autism are most familiar with. I freely admit to being completely terrified that I would have a child with autism before I had Ry. I had this perception, which is quite common, that people with autism are unable to make emotional connections with even their closest family members. I thought that having a child with autism would mean raising someone who would never care whether I was dead or alive and with whom I’d never share any meaningful social interaction. And God, who could blame anyone for being afraid of that?
Have you ever seen those bumper stickers that say, “I love someone with autism”? It is a good message as far as it goes, but I think a better one is “Someone with autism loves me”. “I love someone with autism” when coupled with the scary red flags list lends an aura of heroism to the family members of autistic individuals. Look how they are able to fight through all of the terrible symptoms of autism to find a way to love that autistic person! How amazing!
Do you know what? It’s easy to love Rylan. It’s as easy as it is to love Pippa. He’s my child. He’s part of me. Yes, he does things that aggravate me and stretch my patience to its breaking point every day, but so does Pippa! I think the amazing part of our relationship that everyone is missing is not that I love him, it’s that he loves me and I know it. With all of those “red flag” limitations (and he has ALL of them), he finds a way to fight through the autism fog to show me that he loves me every day. His love looks different from neurotypical love but that doesn’t make it any less real. When I come home after running errands and he starts smiling and flapping his hands, that’s love. When he comes out of his room in the morning and pauses to pat me on the leg three times before he goes to the kitchen to ask for a drink, that’s love. When I finish singing his lullaby at night and he grunts and grabs my hand so I’ll sing it again, that’s love. When he breaks through the intense need to stim with his hands and ignores the noise of the television and the pattern of light coming in from the blinds, and the smell of breakfast cooking all just to sign, “I love you”, well that’s just…indescribable…and it’s love.
Someone with autism loves me. He loves me, he loves his daddy, he loves his sister, and his grandparents, his teachers and therapists, his friends, and his pets. He is a person with feelings and an ability to connect socially even though that connection looks pretty odd from the outside. It’s true that he doesn’t talk. He throws sensory meltdown tantrums in the middle of the grocery store. He makes strange motions with his hands constantly. He can only tolerate small groups of people for short periods of time. But I can tell you for certain that he is not miserable and he’s not isolated. He radiates joy and sweetness and he is so much more than a list of symptoms. He is so much bigger and brighter than any fear I ever had.
Last year, I wrote a blog for Autism Awareness (you can find it here: http://megcentric.blogspot.com/2012/04/rylan-awareness.html) and it is still by far my most-read post, which is frankly pretty awesome. I got a lot of the basics out in that post, so I won’t repeat them here, but I will dive right into what continues to both bother and motivate me about the lack of public autism awareness: the dehumanization of autistic individuals.
I know it sounds heavy. Stick with me, okay! I promise I’m not going to lecture y’all!
Here’s what I mean: I imagine there are millions of people who could recite the “1 in 88” statistic, and even know the “red flags of autism” (lack of eye contact, hand flapping and other repetitive motions, lack of appropriate social smiling and laughing, utter dependence on routines, etc.). The autism awareness campaign has been heavily focused on early detection so far. This approach is aimed at making folks aware that autism exists, that it’s common and what they should look for in their own children if they’re concerned about autism. So, in that respect, it’s great.
What I hate about it, though, is that it reduces a dynamic and varied population of people to a list of rather scary-sounding “symptoms”. As a society, we know the “whats” of autism, but not the “whos”. I’m sure that all awareness campaigns struggle with this same issue. There is vitally important health or behavioral information to impart and so that takes priority. It’s also much easier to tell people their risk of having a child with Down’s syndrome, or a congenital heart defect, or autism than it is to tell them what it’s like to have Down’s Syndrome or to be autistic. I think the autism awareness campaign has been particularly faceless and personality-less, though, and that troubles me.
Presenting only the faceless “cold, hard facts” is so particularly harmful in the case of autism because autism, as described in a clinical manner, sounds terrifying and foreign to a neurotypical person. The list of “red flags” describes an individual who doesn’t hold meaningful conversations, smile or laugh, who throws mysterious and troubling tantrums over changes in routine, who is completely unable to cope with activities like getting their hair cut or nails trimmed or being bathed, who makes odd hand motions constantly and stares at lights. This person does not sound like someone any of us would want to spend time with. This person sounds miserable and closed-off and out of control.
These symptoms are, of course, only half of the story, but thanks to “red flags” awareness, they’re the half that people without personal experience with autism are most familiar with. I freely admit to being completely terrified that I would have a child with autism before I had Ry. I had this perception, which is quite common, that people with autism are unable to make emotional connections with even their closest family members. I thought that having a child with autism would mean raising someone who would never care whether I was dead or alive and with whom I’d never share any meaningful social interaction. And God, who could blame anyone for being afraid of that?
Have you ever seen those bumper stickers that say, “I love someone with autism”? It is a good message as far as it goes, but I think a better one is “Someone with autism loves me”. “I love someone with autism” when coupled with the scary red flags list lends an aura of heroism to the family members of autistic individuals. Look how they are able to fight through all of the terrible symptoms of autism to find a way to love that autistic person! How amazing!
Do you know what? It’s easy to love Rylan. It’s as easy as it is to love Pippa. He’s my child. He’s part of me. Yes, he does things that aggravate me and stretch my patience to its breaking point every day, but so does Pippa! I think the amazing part of our relationship that everyone is missing is not that I love him, it’s that he loves me and I know it. With all of those “red flag” limitations (and he has ALL of them), he finds a way to fight through the autism fog to show me that he loves me every day. His love looks different from neurotypical love but that doesn’t make it any less real. When I come home after running errands and he starts smiling and flapping his hands, that’s love. When he comes out of his room in the morning and pauses to pat me on the leg three times before he goes to the kitchen to ask for a drink, that’s love. When I finish singing his lullaby at night and he grunts and grabs my hand so I’ll sing it again, that’s love. When he breaks through the intense need to stim with his hands and ignores the noise of the television and the pattern of light coming in from the blinds, and the smell of breakfast cooking all just to sign, “I love you”, well that’s just…indescribable…and it’s love.
Someone with autism loves me. He loves me, he loves his daddy, he loves his sister, and his grandparents, his teachers and therapists, his friends, and his pets. He is a person with feelings and an ability to connect socially even though that connection looks pretty odd from the outside. It’s true that he doesn’t talk. He throws sensory meltdown tantrums in the middle of the grocery store. He makes strange motions with his hands constantly. He can only tolerate small groups of people for short periods of time. But I can tell you for certain that he is not miserable and he’s not isolated. He radiates joy and sweetness and he is so much more than a list of symptoms. He is so much bigger and brighter than any fear I ever had.
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