Vaccines don’t cause autism, that’s true, but what’s the underlying concern about autism. Why is it something to be afraid of?
It wasn’t until I was driving home from class one day and was listening to C-SPAN radio. I was in my mid-20s and living in Washington, DC. This would seem weird anywhere else in America, but in DC it’s perfectly normal. The panel discussion being broadcast was teens and adults with autism and how federal funding could better support them. As the show closed, the moderator asked if anyone on the panel felt a vaccine had caused their autism.
One teen panelist spoke up, “no, but it hurts that you would ask that question.”
The moderator’s tone softened, he apologized and asked why. I’m going to paraphrase the boy’s response because it has been several years and for the life of me I have not been able to find a transcript of this event anywhere, which has driven me to madness. If anyone from C-SPAN reads this and knows the talk I’m referring to, please send me a transcript! The panelist’s response was incredibly moving and I wish I could give him credit for it and do his response justice.
As I recall his response was, “because it makes me feel like I’m damaged or broken, when I’m not. I was born this way. My brain just works differently than most other people’s. When people talk about vaccines and autism it makes me feel like I’m not a person but a ‘bad result.’ It reminds me that no one wants a kid like me and parents will risk their kid’s lives and everyone else’s just to make sure their kid doesn’t turn out like me.”
So one thing you should know about me as an Autistic person, and this might apply to others, but I don’t know that it’s totally widespread among the Autistic population, is that I am pretty tied to my routines. They’re essential to how I function in the workplace, and they’re essential to how I function at home (the latter helps my kids, too – knowing what to expect on a day to day basis is important to them, too). I don’t do well when they’re interrupted.
I work a really good job for me. I’m the cook at a local preschool (that provides childcare and education to kids from 6 weeks old to 5 years old). It is a far cry from my last job, which was very social intensive, and could vary quite a bit. There were ways of doing things, but if something came up (like a bus full of high school athletes pulled into our parking lot, for example), we had to roll with the punches, as it were. But now, I spend a lot of time in my own space away from people, and a lot of my work is solitary. I’m very set in my routines. I’ve been there for just over two months and I have my own way of doing things and in my own order.
But as I cannot stay for 10 hours a day, and as we have an inspection coming up soon, they sent me someone to help with the order today, and to help go through what I need to focus on for the inspection.
This is good! But this is also bad.
It’s good because yes, I need the help in order to get everything in order, because this is the first corporate inspection I’ve had, and I need to know what to expect.
It’s bad because my brain is going “holy crap I don’t know what to do here because I have this way of doing things and now you’re moving stuff around and what if I can’t find things? And ack, why are you moving that around? It’s been there since the first day I worked here, and why are you doing that?”
I’m grateful for the help, I am. I am just having such a hard time getting my brain to cooperate and believe that this is 100% a good thing.
Next time, I wish I had some notice. Or I wish she would have come to me when it was spring break (like I had asked) when I could have stayed for longer because I had paid for childcare for the entire week, from 6am-630pm if I had wanted to stay that long.
But this interrupting me at 9:45 am, and again at 1pm, and moving things around and now I don’t have places for things I did have places for before? I don’t know. I’m frustrated.
And it’s easy to go “@#$%# neurotypicals!”
But I know it’s not her fault. It’s not even the office’s fault. It’s just that I need to be more explicit about accommodations and what I need. It means that I need to say “you need to write down what you want me to do with these things” instead of them sending someone in to help.
Tomorrow is another day. The order is put away, so hopefully she’ll just have some notes and I’ll get everything in order.
The world will not end because today, my routine was interrupted. I will adapt, and I’ve told myself the truth – “you’ve dealt with worse.”
Today is World Autism Day, and for us Autistic people, it’s Autism Acceptance Day. That means that many of us are using hashtags like #redinstead (which used to be #walkinred – I used both) and #toneitdowntaupe.
[image description: a photograph feature a person wearing a pair of red Converse-like shoes and a pair of blue jeans. A tan patterned rug is shown underneath the person’s feet]
It’s been about four years since I first started blogging about autism, and I’ve noticed some interesting things.
Facebook has this app where it will show you what you were doing or posting on the same day a year, two years, etc. ago. It’s sometimes fun to go back and see what you were doing on those days. It’s sometimes heartbreaking when you see photos of people who aren’t in your life anymore. It’s sometimes interesting to see how far you’ve come.
The past four years, my timeline has been filled with posts from Tone it Down Taupe and Walk in Red. I have some fantastic activist friends who have shared a bunch of things with me, and whose posts I have shared on my page.
But I didn’t always know what I know now. I’ve had Facebook for much longer than four years. So looking back on some of those days is distressing. One year, I lit it up blue. I don’t think I knew back then that it was to do with Autism Speaks. I definitely knew by that time that Autism Speaks was no good, but I didn’t realize that Light it Up Blue was basically supporting Autism Speaks.
I’ve learned a lot since then, thanks to a lot of reading (I was always good at that) and some patient people who got me to see that “uh, no, this is not quite as good as you think it is, and here’s why”.
It’s part of why I’ve begun in the past year or so to at least attempt to gently, kindly educate when I can, when it is possible and it’s clear the person is at least trying . I’m not perfect. I sometimes lash out when people use really awful language to discuss things that are pretty much absolutes (like, YES! All autistic people deserve dignity and to not have their care needs blasted all over the internet by their parents and caretakers). I have certain triggers, and I’m sorry, but I have a hard time taking you seriously if you refuse to read the information I provided (or at least start a Google search on the topic and read a tiny bit before demanding that I educate you). But I am trying, a lot more than I was in the past.
I remember what it was like to be ignorant. When my daughter was diagnosed definitively at age 3, the first resource that the doctors pointed me to was Autism Speaks. I wrinkled my nose at some of what I read, and I decided that Google was a better idea, because I was not liking some of the language that I encountered. Comments about grief upon obtaining a diagnosis were so jarring to me because I knew something was different from the time my daughter was 14 months old. A diagnosis was confirmation of what I already knew to be true, not a surprise or a shock or something that was causing me grief What a foreign concept.
Luckily, I never got too far into Autism Speaks. I didn’t jump on the cure train, that’s for sure. I wanted my kids to have the best life possible, and I knew that began not with therapies to change who they were, but with educational tools to help them learn in the way that was most comfortable for them. Eventually, all of this acceptance and understanding and learning about my kids and how their brain worked made me realize that oh, I wasn’t so normal after all, and oh, they’re taking after me . That journey of self discovery is something I’ll talk about another time, but it began when I was 27 and ended definitively with my own diagnosis when I was 30, which was nearly five years ago. Once I realized that I was a lot more like my kids than I was like the neurotypical people I knew, autism stopped being this bogeyman and I realized that no, not all parents know their kids and their triggers as instinctively as I did.
For instance, I hated Walmart for all of its sensory obnoxiousness, and my kids did too. I figured this out fairly quickly and we did some online ordering, some shopping in other stores. I knew that the lights and the noise and smells bothered them, because they bothered me. I could see them react in the same way I was. I had just had 25+ years of being told that I was overreacting and finding ways of mitigating the pain of sensory overload, so I got us all out of there fairly quickly.
It still took a couple of years after figuring out that I might be Autistic for me to say that out loud, for me to identify that outside of my personal blog (not this one), and it still wasn’t until this year that I was fully confident of being “out” about being Autistic with everyone I encounter on a daily basis.
So having said that, I’m trying to be kind to those I meet. I’m trying to help form this bridge of knowledge between those whose kids have just been diagnosed and activists (both autistic and not) who have been in the trenches for decades.
April is a hard month for a lot of us. We can’t go outside without encountering something related to Autism Speaks and lighting it up blue. So please, be kind, think about what you’re posting and whether an Autistic person would be helped or hurt by it, and please at least start looking up information on a topic before you demand that an Autistic person educate you about it.
Please feel free to connect with me on my facebook page here. You can also message me there.
I’m sorry that this is not a proper blog post. This is really just an unedited (except by internal self editor) set of thoughts about the new character Julia, inspired by some things that my fellow autistic friends have posted.
First, let me say that I like Julia as a concept but she’s very one dimensional. It’s obvious that there’s a big “autism parent” influence on her creation, because I am seeing a lot of language that I get from Autism parents rather than language from autistic people. I know that ASAN was involved. But the ways that she’s described isn’t really about a person. It’s about a list of characteristics, of symptoms. Which is really how autistic people are described by neurotypical and non autistic people.
I appreciate that she’s presented in a very age appropriate way. I expected nothing less of Sesame Street. I also know that having a main character, like Elmo, introduce her is typical of Sesame Street. Or like Bob, a human character in this clip, though technically he’s simply providing interpretation for her, not speaking about her as if she weren’t there (though that legitimately does happen to D/deaf and hard of hearing people in real life all the time, being spoken about while still in the room). It isn’t that I have an issue with Elmo introducing her. It’s that I don’t get a sense of Julia coming through as I did with Samara. I didn’t get a sense of any of her personality beyond a checklist of symptoms.
As for the family stories, I liked parts of them. But I still saw plenty of subtle and not so subtle ableism. It’s subtle to neurotypical people because they might not pick up on it right away. And even autistic people like me might feel something off but not immediately identify what it is that’s off. I want to offer suggestions for Yusenia’s family that involves not restraining her. I have a sensitive head and so does my daughter and I have found a brush that makes it not just bearable or tolerable but simple, easy, fun and not stressful. I want to tell Yesenia’s dad that birthday celebrations don’t have to fit a mold. That it’s okay to not tolerate the stress and noise and there’s other fun things to do with friends that are atypical but fun.
I am a parent of two wonderful autistic kids (one, who, like me, also has ADHD). We have very different interests. I haven’t celebrated a birthday in a typical way since I was a child. Even as a child I only had a few birthdays that were celebrated in typical ways (and those were exhausting for me) and many times were considered too young for my actual age. For instance I went bowling with a few friends and had a sleepover for my 16th birthday. And that’s okay! My aunt took me to my favorite restaurant about six weeks after my birthday (something we planned; I had to wait until I had a day off and could do this without our schedules clashing). We spent about an hour and a half there and it was lovely! I hope I get to do this again this coming year. Things don’t have to be like everyone says they should be to be acceptable. Find your normal.
Autistic adults – where are we in this? Linda was the first deaf character I ever saw on TV. I know there have been other adults with various disabilities on Sesame Street, as well as kids. I want to see an autistic adult on Sesame Street, even if they are nothing like me.
Finally, I think Sesame Street has done some great things with acceptance of all people. They were the first to show me a character who was deaf and a character in a wheelchair. They were the first show to introduce racial and economic diversity to my young self and I appreciate that. But here’s the thing. Four year olds don’t really need a primer on autism. They need a primer on how do I help my friend have as much fun as I’m having? So a checklist on autism isn’t helpful (which is what I feel like Julia’s app story is, a checklist). Being an accepting person and finding out how to make your friend comfortable and asking that friend, which is not something I see happening with Julia at all (Elmo talks to Abby about Julia ; but they’re not really asking Julia what she wants and needs). I want to know who Julia is. I want to see her personality shine through.
Dear Sesame Street,
I grew up watching your show. I was born in 1981 and I have many fond memories of watching Sesame Street with various family members. It made me happy when I saw kids who weren’t abled or were diverse in some way. You made it ok to be different, to think differently, to behave different from the norm and still be ok. For my early childhood anyways, between you and Mr. Rogers, I felt like it was okay to be me.
When I had children, I couldn’t wait to introduce my kids to Sesame Street. They loved it just as much as I did. I’m fairly certain my daughter was watching it long before her second birthday.
So when I saw that you were beginning a new autism initiative, I was tentatively excited. After all, you helped this autistic person accept themselves. Both of my children are also autistic and I hoped that this would be more explicit acceptance of autistic people.
But then I found out that you were partnering with Autism Speaks, which sounds great, but is not. Autism Speaks contributes to the stigma against autistic people in a big way. So I, along with other supporters of Boycott Autism Speaks, tweeted you to let you know how we felt. We left messages on your Facebook page. Yet we received no response. (But I did see a statement from ASAN regarding their involvement, so this is a small somewhat good step) .
This week, you introduced Julia, an autistic Muppet. I think she’s great, and as an autistic person who is not a young boy, having a character who is autistic be a girl is a huge step. I think many of the stories are good, too. It’s fantastic to see an autistic person use AAC and not be shamed for it. It’s great to see a child stim and it be okay. (I was not so pleased with the casual discussion of holding down an autistic kid to brush her hair. That’s all kinds of wrong).
But then I go to the resources on your page and there’s a resource page for parents and teachers and siblings and? Where are the resources for autistic people? Then I realized that this was never for us. This was never so kids like mine could have a character to relate to. This was so that parents could have a character to point to so they can explain autism. This is so that other kids know what to look for to identify autistic kids. This isn’t really for me or for my kids. This isn’t for people like us. This is for others to explain us.
All of this is so clear when I realize that Julia isn’t a real Muppet. She’s a cartoon. She’s not like Elmo and Abby Cadabby and Rosita and Grover and Telly. She’s just a cartoon. As autistic people, we aren’t often considered real people. We are often calling ourselves unpeople in autistic spaces because that’s how people treat us. There are studies done about whether autistic people are capable of pain, of emotion. And this is only reinforcing that.
With collaboration with Autism Speaks and Autism Daddy, I am not surprised. But I’m hurt.
I don’t expect perfection. But with the person first language (notice my use of identity first language? It’s intentional because most of the autistic community prefers that), the fact that Julia isn’t a real Muppet and the lack of resources for autistic people, I’m a bit miffed. Because you have the ability to do much better. But you chose to center this on non autistic voices, while never responding to the autistic people begging you to do what’s right.
I see that this is a step toward acceptance and understanding. It might help preschool kids accept kids like mine, and is a step toward understanding. But we still have a long way to go.
So its been several years since I first wrote my Autism Speaks post, which has quite a funny story behind it. It might never have existed at all had I not typed and re typed the same answers to the same questions over and over again. I’m kind of a researcher by nature and I was posting a lot of responses to people who wondered why I disliked Autism Speaks so much. I had some basic reasons, like “negative stereotypes, awful ad campaigns and pro-cure rhetoric” but knew there was more out there. So I did what came naturally to me – I looked up their financial records, times they’ve come under fire in the news, read some op-ed pieces and other personalized accounts. So I decided, wow, if I put this all in one place, this could be really useful! People could have a post with all these links to further information about Autism Speaks so they could read more in detail.
My initial post was much smaller than the two that exist today. I’ve edited the first one quite a few times, adding and removing sponsors (yay Panera and Build a Bear! You rock!), editing broken links etc.
I never would have guessed that so many people would read these two posts, that people would reference me in research papers, that I’d be linked in various op-eds and blogs. I’ve been linked in The Huffington Post, TIME magazine online and a few others and it’s mind boggling. Love Explosions ans The Diary of a Mom have linked me, and they have huge fan bases.
Because when it comes down to it, I’m kind of a nobody. I’m an autistic adult who works in fast food management and who cries at the end of their shifts a lot of the time. Who can’t focus or remember things a lot of the time, who needs medication to make it through the day without breaking down, who has hearing and auditory processing issues, but who does the best that I can because I have two kids counting on me. I’m just me. And I’ve never been really good at anything except maybe condensing information, which is what I’ve done with my Autism Speaks posts. I’m thrilled and humbled and honored. I’m proud to have written something that matters to people. I get messages on Facebook and Twitter and Tumblr from fellow autistic people who tell me that they felt hopeless and broken until they realized that the negative messages and stereotypes that Autism Speaks and their ilk were perpetuating had a huge impact on the way they felt about themselves. It’s an honor to have been part of that self acceptance.
It doesn’t make it any less surprising.