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It’s World Autism Day again

Today is World Autism Day.  It seems like only yesterday that it was last year’s World Autism Day. And yet, here we are again.

This day is always difficult for me, because while on the one hand, I want to say “yes! Let’s focus on autism and how it affects us!”, I just can’t, because of who is behind this campaign. Autism Speaks is the primary organization behind autism awareness, especially in the United States.  I cannot condone their message of fear and dehumanization.  I cannot sit back and be passive.

When I see that blue puzzle piece, or one of those Autism Speaks arm bands/bracelets, something within me dies.  Something makes me feel ill and shaky, and I wish that I didn’t have such a visceral reaction to a symbol like this.  But this is my blog, and I’m an honest person, and yes, Ms. clothing store manager, every time you hand me your Autism Speaks Chase card, I have to curb my desire to just promo off your entire meal so that Autism Speaks doesn’t receive a cent.  

I was a naive person for a long time.  I believed that most people were good and didn’t wish to cause any harm. I still think in some ways that is true, but not meaning to do harm and actively working to not cause harm are two different things.  When a child is diagnosed with autism, one of the first resources that medical professionals usually hook parents up with is Autism Speaks.  So being clueless and not understanding the harm is really not something I’m going to be angry about.  However, if an autistic person (or ally) says “hey, Autism Speaks is bad because of these reasons” and you still insist that we have to do something to prove it, well, I know that I can’t count on you to be my ally, and you are certainly causing harm.

There are dozens of companies, celebrities, and even philanthropic associations that support Autism Speaks.  They mean well, but they consistently ignore autistic voices.  I had a rather enlightening interaction just today with Ed Asner, and it made me incredibly sad and frustrated that someone who has the ability to do so much good chooses instead to complain about autistic people making too much of a fuss about Autism Speaks.  Last year, I was accused of being a troll by William Shatner’s Twitter followers because I tweeted the same message to half a dozen celebrities, who were taking part in a very specific venture with Autism Speaks.  It’s nothing new, but it’s frustrating that it seems like people only care about supporting “autism awareness” when it doesn’t cost them anything.  I don’t mean financially.  I mean, “hey, look, I did a good thing – I support Autism, so there’s my good deed for the day and my pat on the back.”  

I want real support. I don’t want this feel good “support” that does nothing to help me, my kids, or anyone else who shares my diagnosis.  What good does it do to be aware that autism exists? Most people are aware, but many people still call autistic kids brats, don’t understand what autism actually entails, and even parents of autistic kids still attribute things that are not autism to autism (like seizures, gastrointestinal issues, etc.).  

So for World Autism Day, what I’d really like is acceptance and understanding.  I want people to understand that I am a person, I am an autistic person, and no, I don’t need that part of me erased.  I don’t need a cure, and autism didn’t kidnap the allistic child that I would have been.  I didn’t destroy my parents’ marriage.  I didn’t ruin my family’s lives.  

 
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Posted by on April 3, 2014 in Uncategorized

 

What is success?

I will write a post soon about Autism Speaks and how now is the prime time to talk to their corporate partners about withdrawing their support.  That’s something that I’ll focus on after this weekend is over, and in the meantime, if you’re reading this, please feel free to sign the petition here, and visit the webpage here

But today I need to write about something that’s been bothering me for the past few months, and something that I think a lot of non-neurotypical people, whether they’re autistic or not, will understand.  

And that is NT standards when it comes to career choice and their terms of “success”.

I work at the biggest fast food chain in the world.  I worked there for a full seven months and received a promotion and a raise.  I now make above minimum wage, but I don’t make good money by any stretch of the imagination.  I celebrated the day that my pay was more than $8.00 an hour.

A little bit of background – I am in my early 30s, married, with two children.  I have a bachelor’s degree in English, and I have worked in a variety of fields, from education to retail to food service to childcare.  I have done many different things, but when it came time to reenter the workforce after being a stay at home parent for three years, I chose what most people see as a simple job (“one that even a monkey could do” is how many people describe it) because it’s something I knew I could excel at, and the hours were do-able with two children in school.

But it is anything but simple for me.  

Oh, it’s not that the job is hard in and of itself.  I work in the drive thru, mostly in the early morning hours, which means that I make coffee, take orders, and cash out people’s orders before they reach the second drive thru window and receive their order.  At its essence, all I need to do is listen to people’s orders and press the buttons on the touch screen monitor which communicates the customer’s order to the people working on the grill.  

It’s also not very stressful socially, on the surface.  My social interaction with people is just seconds long.  I smile, ask if I can take their order, thank them, and greet them again, tell them their total, take their money, make change, and thank them again.  It’s a simple formula, and it’s why this works so well for me as an autistic person – because scripts are easy.

The problem is that many times, I’m scheduled for ten hours of this.  Not only is that physically demanding to be on my feet for that length of time (and yes, it is), but it’s socially demanding in a way that makes my brain feel fuzzy by about the 7th hour of work.  

Multitasking is something I’ve had to learn, and I’m still not entirely good at it.  Sometimes, customers at the window are angry that I’m too slow because I’m taking an order and I can’t listen to two people talk at once (one through my headset and one at my window) and people over the headset are angry because I’ve asked them to repeat their order.  

Add to that the amazing amounts of noise that permeate the building, as well as the noise that comes onto my headset with every freaking customer (it’s a beep, a loud, horrible beep) as well as any residual noise outside (sirens, the noise of a truck or car running when it’s entirely too old) and I’m skating on the edge of a shutdown or a meltdown every single afternoon/evening.

This doesn’t even touch on the fact that I often have to endure racist and ableist comments from managers and other employees, some even to my face because surprise! Many people haven’t figured out that I’m autistic, even though it’s in my employment papers.  

Last week, I attended an event with my general manager at the local Ronald McDonald House (which, when we’re talking about charities, is definitely an organization that you should support – the money funds a place to stay for parents and other family members when they have a very ill child in the hospital).  I love doing these events, the Share-A-Meal, where a group of us from our store, which includes customers, management, employees and our families and we cook a meal to share with very scared, very stressed, very tired family members of sick children.  This time, we shared a holiday meal, and I enjoyed every last moment.  The owner of our franchise was even there, and I frosted cupcakes with him, which was kind of a fun thing to do.

The drive on the way over made my heart sink, though.  She was discussing another employee’s conversation earlier in the day, a quite young employee (in his early 20s, if not younger), and how he had been discussing wanting to have children.  I don’t remember her exact words, but she basically insinuated that people like him should never have children.  When she said “people like him”, what she meant was “developmentally or learning disabled”, as this person has a diagnosis of ADHD (and probably, from my interactions, has other disabilities that maybe resonate with me a little bit  - I won’t ever go as far as to diagnose someone, but he pings on my autism radar pretty hard).  She meant people like me.  

I hear the “r” word from every employee except two – one of whom is autistic like me and one of whom has a diagnosis of Tourette’s.  I am grateful to work with a few people who understand the impact of that word, who understand what it feels like to hear that and be brought back to your childhood all in a second.  

I had to ask advice the other day from friends near and far about how to respond to something at work, and this is part of the problem with Autism Speaks, just so we’re clear.  There is a woman who comes through the drive thru on at least a biweekly basis.  She’s a regular because she is the store manager of one of the retail stores up the road from us.  She pays every single time with a Chase credit card that uses this program, and is embossed with Autism Speaks’ logo. The first time she saw my ASAN bracelet, she wrinkled her nose at it.  Now we just pretend we don’t see each other’s logo, but I regularly have to take a moment to calm my heart rate when I swipe her card.  The first few times, I did actually have to find a way to step away for a moment and take deep breaths because I was on the edge of a panic attack.  The thought that my hand was responsible for swiping that card and giving that small percentage to Autism Speaks sickened me.  

These are things I deal with often.

That doesn’t even touch on the real topic of this post, which was supposed to be about NT standards.  Here’s the thing – as much as I want to have what is in NT people’s eyes, a successful career, I can’t guarantee that is going to happen.  85% of disabled people are unemployed or underemployed.  I fit the latter category, I believe, as I work in a field that I am technically overqualified for.  1 in 3 autistic young people have never had a job. I face some serious roadblocks to being able to obtain and keep a job that pays enough for me to live off of.  

Because of the fact that I work at the only fast food restaurant within walking distance of my alma mater, I regularly encounter teachers and administrators who were once my teachers and administrators, as well as former classmates who work there now.  One of these people regularly gives me a look that says “I’m disappointed in you.  I expected so much more.”  Every single time, I want to cry.  I have a very difficult time taking her money because I want to explain.  I want to say “you taught me.  You know my weaknesses and my strengths.  Going to college doesn’t change those things.”  But that is what it is to be able bodied, and privileged, and to have graduated from the same sort of school you teach at, which is a private Christian school.  Being all of those things means that you don’t have to think about the difficulties of life, that we live in a society that doesn’t allow for autistic people to define our own success.  It means that if you’re disabled, you have to do more.  You have to prove that you’re as good, if not better than your NT peers.  

I can’t do that.  And in her eyes, that makes me a failure.  Never mind that I have a college degree that in many ways, I can’t use.  Never mind that as much as I’d love to go back to being an educator, I just can’t do it because I often lose my train of thought and am easily manipulated (by 12 year olds!).  

This isn’t a pity party.  I’m not feeling sorry for myself.  I simply know that in the society in which I live, I cannot do exactly what I want and pay the bills.  I know that I will have difficulty selling myself in an interview.  I will have difficulty navigating social situations.  I may not dress in a way that people consider appropriate for my age. Many people assume I’m far younger than I am because sensory-wise, I prefer a tshirt and jeans to a dress and high heels. 

Maybe one day, I’ll live in a society where being autistic and employed means something different for me.  I hope that by the time my children reach adulthood, they have far more opportunities to shine.

 
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Posted by on December 6, 2013 in Uncategorized

 

I am tired (tw for institutionalization, abuse, murder, dehumanization)

I am tired.

I am tired of proving my humanity.

I am tired of explaining to you why you shouldn’t treat your autistic kids like a zoo exhibit.

I am tired of hearing parents whine about what it’s like to care for an autistic kid.

I am tired of hearing how I should be more understanding and what about my parents -  don’t I know that I probably made them want to kill themselves too?

I am tired of being mocked because I misunderstood.

I am tired of being insulted because I’m “lazy” for choosing a job that allows me to still be able to function at the end of the day, rather one that sends me into a panicked meltdown every day, even if I’m “wasting” my intelligence and college degree.

Forgive me if I’m not empathetic enough. Forgive me if I can’t be nice while you dehumanize me.

Maybe I’d be able to have more empathy if you’d stop putting your autistic kid’s photo or video of them melting down on the Internet. Maybe if you stopped comparing us to dogs and making jokes about putting us in a pen, well, I’d care about your feelings a lot more.

 
11 Comments

Posted by on November 26, 2013 in Uncategorized

 

The problem with Sevenly

Dear reader,

You may not know who Sevenly is.  You may not know why supporting them is a problem.  On the surface, they seem like a great cause.  Their mission, according to their website is

We believe people matter. We have found that there is no greater calling than to provide, heal, rescue, and serve the others. Ultimately, our desire is to move a generation toward generosity and an intentional love for others. Our overall purpose is driven from this verse found in the book of Matthew 22:36-40.

 

That sounds nice, doesn’t it? Also from their website is a short excerpt of what they do:

Sevenly is a weekly cause activation platform cause marketplace that raises money for the world’s greatest causes through the selling of unique and exclusive products. Some have even called us a cause crowdfunding platform. Every week (7 days) we partner with a new non-profit organization, raising funding and awareness that these organizations desperately need. we and create unique art and limited edition products that we sell exclusively on our website Sevenly.org for 7 days. For every product sold, we give that week’s non-profit organization $7. For example, if we sold 1,000 products, Sevenly would donate $7,000.

 

You may know that Sevenly helps victims of domestic violence, burn victims who need surgery, victims of bullying.  It sounds like a really great cause, doesn’t it? An organization sells (most often) a t-shirt, and $7 of the proceeds go toward a charity, as they say a “non-profit organization”.

Here’s the problem.  Over and over and over again, Sevenly has claimed to “support autism” while giving to organizations that are downright hateful and harmful.

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First, about a year ago, they donated for the first time to Autism Speaks with their “It’s Time to Listen” shirt.  That campaign’s revenue was $22,855.  Autistic people (including myself) protested, citing information on their Facebook page and contacting them via their website to let them know about why Autism Speaks doesn’t help autistic people, and why they should not partner with such an organization.  

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Then they released their “Live Loud for Autism” shirt, which seems absolutely ridiculously insulting and I know a few of my fellow autistic folks rolled their eyes in disbelief at that choice.  Not only is sound sensitivity most certainly a thing for autistic people, but the fact that Autistic people’s voices are silenced is very well known in the autism/neurodiversity community.  Again they donated to Autism Speaks, this time to the tune of $204,377.

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Then they asked us to “Light it up blue for autism”, a common slogan for Autism Awareness month, headed up by no other than Autism Speaks.  This time, they raised $245,709.

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Then, it seemed like things might be changing, when they premiered their “Different Not Less” shirt, quoting the words of Temple Grandin.  This time, their charity changed to the National Autism Association, which was at least slightly better than Autism Speaks.  This time, they only raised $34,531.

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They supported the National Autism Association for a second time with their “Radical Possibilities: Stand up for Autism” shirt.  They raised $53,332, and it appeared (at least to me) that maybe the tide was turning.

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Then, they proved that they didn’t listen to a word that autistic people and our families, friends, and other allies were saying.  That’s when they chose to support Generation Rescue.  For those unaware, Generation Rescue is the foundation that Jenny McCarthy founded, and they are behind many biomedical “cures” that are harmful, if not downright deadly to autistic children.  This time, Sevenly raised $19,516.

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This week, Sevenly is again donating to Autism Speaks.  As I write this, over $61,000 has been raised.  This time, the support of Sevenly’s sponsors has increased the amount of money donated to $14 per item rather than the usual $7.  A variety of shirts are being sold, from the “Different Not Less” to the “Live Loud for Autism”.  Their infographic on their website uses fear-mongering techniques not unlike those of Autism Speaks in order to gain support, such as the “fact” that autism costs the average family $60,000 a year.  (My inner skeptic is yelling “QUIT THE ABUSIVE THERAPY AND YOU WON’T BE SPENDING $60K).  

The Autistic Self Advocacy Network has implored autistic people and our allies to not support Sevenly, and to let them know what they think in this post.Many of us have done so, but unfortunately, it doesn’t seem like Sevenly wants to hear from autistic people.  They have made posts on their Facebook page asking who loves a person with autism, who is a teacher for autistic kids, who is a father or brother or other male relative (to promote their “men’s line”) of an autistic person.  But nowhere is there any mention of being an autistic person.  Their comments section has been flooded by autistic people and neurodiversity advocates who have told them time and time again that Autism Speaks isn’t good for autistic people, and have laid out the reasons why.  But they don’t want to listen.

So, Sevenly.  What is it going to take? When will you listen to the people who you claim you want to help? Or are you just another company who wants to pat themselves on the back for “supporting” autistic people, while ignoring us at the same time?

 

 
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Posted by on November 21, 2013 in Uncategorized

 

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We are not a burden (tw: abuse, rape, murder, Autism Speaks)

Suzanne Wright, co-founder of Autism Speaks, painted a grim picture of what it’s like to be related to someone who is autistic. She referred to autistic people as people who had been stolen away, citing a statistic of 3 million people, while continuing to refer to us as autistic children. I wondered, as I read the editorial on Autism Speaks’ website, what her grandson would think. How she treats him. Whether she presumes competence. It hurt to think about, because I know the way people treat us, especially those who are supposed to love and accept us. Especially our family members. They’ve been sold on the idea that Autism Speaks has shouted from the rooftops, the idea that we are sick, that we do nothing but cause our families heartache. That we are a burden.

Suzanne Wright and Autism Speaks don’t speak for me. This is not the autism that I live. This is not the truth. She an her husband founded Autism Speaks to help autistic people, supposedly, but the general consensus by those truly paying attention is that Autism Speaks does none of that. You don’t help a population of people by searching for a way to eliminate them, and by erasing the voices of autistic people as either too high functioning to count or too low functioning to be capable of speaking for themselves. That 3 million statistic includes all autistic people, from the nonspeaking to the highly verbal. You don’t get to use our numbers and then silence us.

I am not anti research, nor have I ever been. I believe that there may be ways to help the autistic community through research into co-existing conditions that make it difficult to live our lives. I do not believe that Autism Speaks is the right organization to be able to do that. At one time, Autism Speaks might have been able to be reformed. Autistic people have voiced our concern from the start about the  tragedy rhetoric. We have lived to see the results of that, the least of which is the low/high functioning dichotomy that silences autistic people.

And some of us have not lived. Some of us have been abused, raped, tortured, killed – at the hands of Autism Speaks and those who believe like them. Autism Speaks is promoting the Judge Rotenberg Center, which if I were on the fence, would be what tipped me over into the anti Autism Speaks camp.

You, Autism Speaks, have dehumanized us. We are entities, not people. Able is says we are incapable of really living, incapable of consent or saying no. Many of us have PTSD as well as being autistic because of the therapy you deem necessary.

Stop.

You no longer have an autistic person on your leadership. Even parent advocates are withdrawing their support. You should listen and listen carefully. We are not a burden. Our families are not destroyed and my life is not a tragedy.

 
3 Comments

Posted by on November 19, 2013 in Uncategorized

 

Autism is… (for the “This is Autism” flashblog)

Autism is needing a visual schedule even at age 30.

Autism is the joy of flapping your hands when something makes your heart sing.

Autism is needing to allot hours to performing basic skills.

Autism is objects ceasing to exist if you can’t see them.

Autism is reveling in the good textures – running your fingers over every bump, curve and rivet.

Autism is finding a pair of headphones that makes going out in public bearable.

Autism is holding a bachelor’s degree but working in a drive thru.

Autism is echolalia.

Autism is seeing details that others miss.

Autism is being able to recite pages and pages of text that you learned when you were sixteen but unable to remember something you read an hour ago.

Autism is the fantastic feeling of not needing a weighted blanket because your (also autistic) seven year old is more than willing to press herself on top of your chest.

Autism is explaining to a new friend every last detail of your latest obsession and being overcome with relief when they don’t call you a freak.

Autism is joy and it is struggle.

Autism is not a tragedy or a health crisis.

 
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Posted by on November 19, 2013 in Uncategorized

 

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Autistic Pride Day 2013

Yesterday was Autistic Pride Day. You can read more about it here.

It was not Autism Pride Day. Please understand that these are different concepts. The words of another autistic person serve me well here.

I do not call myself Autistic out of ignorance of person first language or to shorten what I say. I call myself Autistic as a deliberate act of defiance towards those who try to separate my personhood from my neurology.

(Neurodivergent K at Radical Neurodivergence Speaking

That is the crux of the matter. To be Autistic, especially very unashamedly autistic, not conforming to NT standards, has its costs. If you do so very publicly, it is possible to be more open to criticism, to grand proclamations about your diagnosis and “functioning label”.

There are very few places and events that exist just for us. I thought Autistic Pride Day was one of them. I thought wrong. I saw several posts made by family members of autistic people, talking about how much they’ve progressed thanks to therapy or other interventions. Or what an inspiration they are. Or how indistinguishable they are from their peers and how you can’t even tell that they are autistic.

This is not okay.

This is against the spirit of Autistic Pride Day.

I wrote on my Facebook page last night “Allistics, Autistic Pride day is not for you”. That by no means determines that allistic people cannot post about Autistic Pride Day, or that they cannot signal boost our posts. But ones that are anti-neurodiversity are not okay with me.

If you want an Autism Pride Day, make one for yourself. Don’t coop our day.

 

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