Why does it matter

(A note unrelated to today’s post: Just thought I would let you all know that I am perfectly fine with being called Rose in your comments directed at me vs being called The Caffeinated Autistic. I know the latter is a mouthful and annoying to type out every time.)

Why does it matter that the rhetoric around autism change? Why should we focus on getting rid of preconceived (limited) notions of what it’s like to be autistic? Because what we can and cannot do is determined (mostly by neurotypical individuals) the moment they know we are autistic. Because of incidents like this. Because our interests are “special” and “obsessive” whereas NT fans of similar things are allowed to express intense excitement too, without being redirected and forced to do things that don’t interest them. Because autism isn’t really fully understood. Because calling us burdens is dehumanizing. Because saying you want to cure autism says to us that we don’t matter. When have we ever been asked what we want? Yes, even the nonverbal among us can tell you that. Surprise, surprise – many, if not most of us don’t want a cure (as the word is generally used; mitigation of symptoms that bother US and not just that bother our NT parents and teachers isn’t a cure). So this is why I do what I do. This is why I educate. And I apologize for not addressing comments as quickly as I would like. My new job is kicking my rear energy-wise. That’s also another thing I will write about – the undemployment and unemployment of autistic people (or why I have an English degree but my autism-related ways of thinking are seen as deficits and why I’m currently a fast food worker wearing a headset).

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13 days

In 13 days, it will be April.

And it will begin.

And I’m terrified.

I’m talking, of course, about Autism Awareness month.  While a good idea in concept, it’s really a terrifying month for autistic people.

Because we get to hear about what burdens we are.

We get to hear about what therapies out there can help us look less autistic (and hey, that’s the goal, right?)

We get to hear about how “high functioning” people don’t count because they can speak (except the judgment is often made against people who can type and who can blog and has nothing to do with speaking in the first place) and how “low functioning” people don’t count because they aren’t self aware enough to even think.

We get to hear about cures, and Autism Speaks and …and… and….

It’s overwhelming.

I also happen to have been born in the month of April.  It really darkens a month that used to be really really happy for me, and it makes me dread the entire month, and want to hide under my comforter until it’s over.

Please, dear readers, understand that I want a better world for all autistics.  I want the public to understand more about autism.  But “awareness” campaigns are faux awareness.  They’re pat-yourself-on-the-back-for-being-a-decent-human-being sort of campaigns.  Please read here about why awareness isn’t enough. It is the single best, most concise post about the subject.

Here’s how you can really help.

You can stand up for autistic people being bullied both online and offline.

You can stand up to Autism Speaks and their sponsors and tell them, “no.  This is not helping autistic people.”

You can fight for every child to receive accommodations in school suited for their individual needs, and for every adult to have accommodations at their workplace and suitable living conditions.

You can fight against the extremely low wage that developmentally disabled people are often paid – far below minimum wage.

You can fight against the preconceived notions about the kind of people that autistic people are (dangerous? rude? Self-centered? Well, some of us are, but that’s not because of autism).

You can stand up and insist that erroneous ideas about autism causation are not based in any scientific fact, and avoiding vaccinating your child does not help prevent autism.

Don’t light it up blue for Autism Speaks.

Don’t accept faux activism as acceptable.

Don’t accept “awareness” that autism exists as being enough, when most people have no idea what autism even is.

Thirteen days left and I’m steeling myself against the barrage of negativity.

I am a person, not a function

There are already so many excellent blogs about this topic, but it seems like it comes up again and again, and I felt I needed to address it, as it’s come up in the comments of my last post.

It is neurotypical and allistic (non-autistic) people who are the ones who are determining that a person is a “high functioning” autistic or a “low functioning” autistic.  To my knowledge, this hasn’t been accepted by the autism community as an appropriate way to speak about people’s needs (though feel free to correct me if I’m wrong).  Some people argue that you can’t talk about where a person falls on the autism spectrum without these labels, but I disagree.  I think that you can be fully clear about a person’s abilities while avoiding the functioning labels BS.

For example:

Jane is a nonspeaking autistic who needs an aide to assist with feeding and dressing, because she has difficulty with her motor skills.

See? I was able to speak about Jane’s actual needs rather than whether she “functions” on the low or high end of the spectrum.

There is no way to be the perfect autistic person.  The problem is that allistic/NT folks want to erase you on both sides! If you’re nonspeaking or need assistance/aides/can’t live on your own, etc., then you clearly don’t have the mental capacity to make decisions for yourself.  If you’re articulate, verbal, can compose fine pieces of writing, have a job where you are successful, have friends, etc., well, then you’re too high functioning to be a part of the conversation, because you really don’t understand what it’s like for those “low functioning autistics”.  Either way, someone is going to speak over you, and that isn’t okay.

I’ve touched on my own personal history before, and I don’t really fall neatly into allistics’ ideas of what a high or a low functioning autistic person is.  I can speak (though it’s difficult for me to get the words out in the right order, unless I have a script), I can write, I have a job, I have a romantic relationship, I have two children, etc.  That doesn’t mean I don’t struggle with a good number of things related to being autistic.  I had to write a note in my son’s notebook (that comes back and forth to school) that the teacher needed to check her email, because I cannot really do phone calls, and find it much easier to communicate my needs via email.  When I worked in childcare this past fall and winter, I wore earplugs so that I could mitigate the noise of crying, and I volunteered to be the one to rock the crying children, because hey, it was stimming that wasn’t looked down upon.  I have lists around my house so that I can complete basic tasks (like laundry, hygiene tasks, cooking, etc.).  I set reminders for myself about 30 minutes before I need to be getting ready/on the road, etc., because my executive functioning levels when it comes to planning is really crap.

I say all of this to say that yes, my diagnosis is Asperger’s.  I did spend much of my life (until age 8) unable to speak to anyone outside of my immediate family, and I was identified as learning disabled very early in my elementary school years.  Had I been evaluated as a toddler, preschooler, or even school aged child with the knowledge that is around today, I feel quite confident that I would emerge with a diagnosis of PDD-NOS or autism because my symptoms, while somewhat atypical (because I could speak; I simply had difficulty forming words around people who weren’t my parents, siblings, or grandparents), were quite pervasive, and they continue to be so, though I’ve found ways of coping now that I am an adult.  Again, you cannot look at an autistic adult and say “you’re not like my child” and have that statement be fully accurate, because your three year old hasn’t had 30 years of learning to cope.  Your three year old has had THREE years to cope, and that’s it.

I am more than what I can do or not do.  I am dependent on others, but so is everyone else in the world.  No one is fully independent (you don’t produce all your own food, do you?).  Stop medicalizing a person’s executive function levels and other means of deciding what is “low functioning” and “high functioning” and just speak about a person’s abilities and their needs.  It’s far more accurate in the long run.

Being erased

Nothing causes me to be angry more than injustice. This can take many forms, and I do my best to fight against it as I am able.

This time, it’s personal. This time, Autism Speaks is attempting to erase us from our own story. Of course, this is nothing new for Autism Speaks, because admitting that autistic people can effect change is completely against everything they try to do.

If Autism Speaks admits that autistic people can do things, you know, not just those “high functioning Aspies”, well that would just destroy the message of tragedy they’re trying to send.

As many of you know, I, along with numerous fellow Autistic people, were upset and troubled by the autofill results that appeared when typing “autistic people should” and “autistic people are”. As such, we participated in two flash blog events, filling in the blanks for ourselves with regard to “autistic people should” and “autistic people are”. As a result, Google took notice. And thishappened.

Fantastic! This is a huge victory! Wellll….yes. But then Autism Speaks reported on their blog, Twitter, and Facebook, giving all credit to Google and erasing the explanation that Autistics had anything to do with it. Have some evidence here, and at that link you can also see the push back by Autistic people (including myself) and our allies.

So far, no apology. A bit of explaining that they didn’t erase anyone, and that they simply reported, didn’t take credit. To that, I say “bull”. I will not be erased from something that I was a part of. I will not allow my (far more vocal) Autistic peers to be erased either.

This is an AUTISTIC victory. It wasn’t parents, professionals, or even allies (as helpful as they were in signal boosting our posts). It was us, the Autistic folks. Do not let us be erased. Do not let Autism Speaks erase us. I demand an apology and a retraction. I’m not letting up.

Why I am Against Autism Speaks (and you should be, too)

Edit 6/20/14 I have updated this and created a new and hopefully better sourced and easier to read document.  Please go here:

https://thecaffeinatedautistic.wordpress.com/new-autism-speaks-masterpost-updated-62014/

(TW: Ableism) Autism Speaks is the most well-known autism charity.  They have the most media coverage and are endorsed by many celebrities, but this certainly does not make them a good organization.

  • Autism Speaks does not have a single autistic member on their board.
  • Autism Speaks only spends 4% of their budget on “family services”.
  • Much of Autism Speaks’ money goes toward research, and much of that research centers on finding a way to eliminate autism, and thus, autistics (which will likely be done through a prenatal test, in the same way that the Down’s Syndrome test is conducted).
  • Autism Speaks produces advertisments, small films, etc. about what a burden autistic people are to society.
  • Autism Speaks was responsible for “Autism Every Day”, which featured a member of their board talking about contemplating murder-suicide of her daughter in front of her daughter. This has now be removed from Autism Speaks’ Youtube channel.
  • Autism Speaks is responsible for the atrocity known as “I am Autism”, a short film produced by the same person who directed the 3rd Harry Potter movie (yes, really) and features an ominous voice saying things like “I am autism…I know where you live…I work faster than pediatric AIDS, cancer, and diabetes combined…I will make sure your marriage fails.”

In short, Autism Speaks is a very large part of the problem; they create a stigma that makes it far more difficult for actual autistic people like myself to be heard, to have our opinions matter, and to fall anywhere outside of the “autistic angel” and “screaming, violent, rocking in the corner autistic” stereotypes. In addition, for them, as well as many other organizations (and the media), autism is considered to be a child’s disorder/disability, and you will often hear people say “where are all the adult autistics?” I can’t tell you how many times I’ve heard that in the past 5 years or so. The answer to that is simple!  We’re right here in front of you.  We may have been misdiagnosed as children with learning disabilities, intellectual disabilities and the like when the diagnoses of autism, PDD-NOS and Asperger’s weren’t as precise (or even existent) as they are now.  We may not have been diagnosed at all and simply treated as though our difficulties are our own doing. We vary in where we fall on the spectrum, though functioning labels are gross and you shouldn’t use them.

For further reading, here are a few resources about Autism Speaks:

Here are a few other terrible things that Autism Speaks has done recently.

  • This woman’s job offer was rescinded after she asked Autism Speaks for accommodations in caring for her autistic son.  They refused, and she made necessary accommodations for childcare, but they withdrew her offer anyways.
  • Autism Speaks shared the news of Google removing hate speech regarding autistics from Google’s autofill feature, completely erasing any mention of autistic people’s flashblogs having anything to do with the change.  It was only after a member of the autism community (and not a parent, but an autistic person themselves) spoke with a reporter about the flashblog and a statement was released to the media that Google decided to make this change.
  • Autism Speaks highlighted AAC use, while erasing those those who actually use AAC devices to communicate.  The focus was on the caretakers, not on the autistic people themselves. (The attached link has a link to a rebuttal by a nonspeaking autistic person, Amy Sequenzia).

There are a number of corporate partners — big businesses (for the most part) who align themselves with Autism Speaks. This can take many different forms, but in general, you should consider that a purchase to any of these companies may benefit Autism Speaks. The list is as follows (thank you, austryzor):

  • ATA Martial Arts
  • Bachman Pretzels
  • Bob’s Red Mill
  • Build A Bear
  • Capital One
  • Casey’s General Stores
  • Continental Accessory
  • Dollar General
  • Dover International Speedway
  • eTrak
  • Fashion Bug
  • FedEx
  • Fox Sports
  • GAP
  • Joe’s Crab Shack
  • Kid Natural Hero
  • Landscape Structures
  • Lindt and Sprungli
  • Mattress Warehouse
  • Med Claims Liaison
  • Modell’s Sporting Goods
  • Panera Bread
  • Pump it Up
  • Queens Flowers
  • Scentsy
  • Shoprite Supermarkets
  • Sprouts Farmers Markets
  • Stadium NEST Fragrances
  • Stella & Dot
  • The Home Depot
  • TJMaxx
  • Total Wine and More
  • Toys R Us
  • White Castle
  • Zales

Some people have contacted me with requests for what organizations actually do help autistic people.  There are a few, in fact, that actually focus on autistic people, and not just autistic children. The final two are actually general disability organizations, and not specific to autism.

The Autistic Self Advocacy Network is pretty much the best choice.

The Autism National Committee

Autism Network International

Autism Women’s Network

TASH

ADAPT

Autistic people are writers

I took a suggestion from this page and I’m going to talk to you about something I am – a writer.

I am not a professional writer. I don’t make money by composing my thoughts into the written word. I am one of the 85% of unemployed and underemployed (I fit the latter category). I am overqualified for my actual occupation, but I hope to change that one day.

Autistic people are writers. We are a very diverse group within ourselves. I know several autistic people who are published. Some write about autism, some do not.

You will not find my name in print. That doesn’t make me any less of a writer.

I am a blogger.

I write fanfiction.

I have participated (and won!) NaNoWrimo two years in a row.

I have things to say.

Writing isn’t always easy for me. People of all neurotypes talk about writer’s block, and I experience that a lot. I also experience a lot of frustration when I am not having difficulty knowing where to go with something I’m writing, but getting the words from my head to the paper, because sometimes? I literally forget what word I’m trying to use. Or I will use a word that sounds similar to the one I’m aiming for, but is different.

But in the end, the effort is worth it. Completing a story, a poem, a blog post that means something to people is worth the frustration. It really is.

I am the author of my own story, and mine alone. My perspective matters.

Autistic people are writers, and I’m proud to be one of them.

Autistic people are…

Last week, we blogged about “Autistic people should…” as a response to Google’s autocomplete suggestions for “autistic people should” and “autistic people can”.  This was a flash blogging event, and there are more entries chronicled here. 

Since then, a number of things have happened.  People took notice. This is a good thing! Google is going to change their search terms. Even large organizations like Autism Speaks noticed! That’s a good thing, right? Oh wait.  Autism Speaks mentioned Google.  They didn’t mention anything about the Autistic people who made this happen.  Comments on their page by Autistic people have gone completely unanswered.  This, on the day when we as Autistics are taking time to mourn our dead, unjustly killed by their caretakers.  Deaths that were caused by the terrible ideals that Autism Speaks perpetuates.  I am demanding an apology from Autism Speaks.

So today, I am going to tell you a little bit about this community of mine.

Autistic people are authors of our own stories.  Too many times, I find an article about an autistic person that makes me think that their voice is going to be adequately represented, that they’re going to be able to tell their own story.  And while that is sometimes true, most of the time it is not.  I’ve gone into the #autism tag on Tumblr on more than one occasion, seeking to connect with my fellow autistic people, and finding nothing more than parents and siblings and educators and so-called “experts” talking about someone they know who “has autism”.

But Autistic people are speaking! Loudly! In many different forums.  I find that I can connect with a great deal of very diverse Autistic individuals online, because it’s certainly easier for most of us to communicate in text-based ways than verbally or in person.  Autistic people are capable of telling our own stories.  While, yes, we may appreciate being backed up by our family members, we don’t need them trampling all over us in order to tell our story for us, as though we cannot do it on our own.

Autistic people are competent.  There’s a saying that goes for all of the disability community, but is especially relevant to autism, as there are many among us who are nonspeaking.  That phrase is “presume competence”.  Assume that regardless of a person’s level of communication, you must presume that they are able to understand you, I’m constantly reminded whenever we talk about presuming competence of Carly Fleischmann, and how her parents were told that she was incapable of understanding.  They were told incorrect information regarding their daughter’s diagnosis, and as such, they assumed that she didn’t have the ability to understand.  That is, until she turned 11, was given access to a computer keyboard and she began typing her thoughts. This is the case with many nonspeaking individuals.  I recall one of the last documentaries I watched (that wasn’t autistic-led, which is hard to find in the first place) was Loving Lampposts.  In it, one of the nonspeaking Autistics said that people presume that he doesn’t have much to say, that there’s little of worth that he will communicate.  This is the problem with in-person communication between neurotypical folks (who are sometimes considered “experts” but really know very little) and autistic folks.  The NT folks see someone who cannot speak, who stims quite a bit, and they think “weird”, “not having anything to contribute”.  However, if these NT folks came upon some of the nonspeaking Autistics I know online, they would claim that there was no way that they could be “low-functioning,” because in many NT folks’ mind, “low-functioning” equals “non-thinking” or “incapable”.  Autistic people are competent.

Autistic people are more than a functioning label.  This is related to point #2, of course.  It’s a little bit ridiculous, but many allistic and NT folks (allistic simply means “not autistic”, whereas NT means “completely neurotypical with no neurodivergences) tend to like to put these labels on those of us who are Autistic.  “High functioning”, “low functioning” — all of these undefined terms that really don’t mean anything.  Laura Tisoncik described the dichotomy best when she said “The difference between high-functioning and low-functioning is that high-functioning means your deficits are ignored, and low- functioning means your assets are ignored.” In other words, it’s a no-win situation.  I’ve had the functioning label thrown at me over and over again.  I’m “too high functioning” to deserve a voice in the debate over a cure, so some say.  But then again, “low functioning” folks don’t get a voice either, because they aren’t able to have coherent thoughts, and opinions and make decisions about their own lives.  I am a person.  Autistic people are people, first and foremost.  We are not functions.  I addressed some of this (and a few other points) in this post.

Autistic people are brilliant. This doesn’t mean “high IQ”.  That’s not what I mean when I say brilliant.  Perhaps it’s somewhat of a throwaway word, overused like “awesome” and “amazing”.  But Autistic people are brilliant.  We are a people who are often treated as though we are not quite human, we are erased, we are dehumanized, we are told we have no empathy, we are monsters, we are not worthy of love or affection, and that in the end, our abusers will be the ones to receive sympathy if we are abused or murdered.  We are told that we are not trustworthy because of our awkward body language and lack of eye contact.  But you know what? We are resilient.  We are survivors, and we fight every single day of our lives to do away with the stigma against people like us.  Not every one of us can be “out” as autistic, because currently, that’s not safe to do.  Despite the fact that autism is a disability covered under the ADA, many of us have been discriminated against with regards to schooling and work, and perhaps it is necessary to hide, to “act neurotypical”.  Autistic people are a community.  We are a community of very different people who share a common experience with the world — an overwhelming yet beautiful place to live.

Autistic people are brilliant.