Routines

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?”

Breathe.

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.”

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Who, me?

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.

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?

 

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.

You aren’t my friend if you Light it Up Blue

Today is World Autism Day. Today, many people have participated in “Light it Up Blue”. I am not one of them.

Please do not misunderstand. I am not trying to ignore autism. I am not trying to say acknowledgment of autism and the move toward greater awareness is a bad thing.

But you are not my friend if you participate KNOWINGLY in an event that was created by an organization who portrays autistic people as burdens, who for a long time were very anti-vaccine in their rhetoric, who have filmed a then-member of their board talking about her thoughts about killing her autistic child and herself (but didn’t because her NT child needed her), and who silences autistic people, removing the very mention of us from our own stories, because clearly, portraying us as capable would ruin the image they are attempting to portray of us. This organization, of course, is Autism Speaks. If you don’t know the detailed reasons why they do not speak for many autistic people, please read my link here.

Today isn’t a very pleasant day for me. I was, thankfully, spared from much of the Light it Up Blue hoopla. I apparently do well in choosing my Facebook friends, for the most part. But I had a few moments that brought me to unwelcome tears. One of those was a longtime friend of mine (not a very close friend, but still a friend) posting information for another friend about curing autism with essential oils and how antidepressants in pregnancy cause autism. I was hurt, amd how do you explain that? How do you explain “this is hurtful because you believe my neurotype is inferior and needs to be fixed rather an accepted” when you think it should be self explanatory?

The truth of the matter is, I shouldn’t have to. I shouldn’t have to explain that, and anyone who brushes me off as an angry autistic, well, yes, you’re right. But it gets tiring defending my right to exist and be treated like a human being. This goes for many other forms of oppression, too, so please don’t believe that I think this is exclusive to autism. It absolutely is not.

If I were to write a letter to the world about what World Autism day is about for me, this is what I would say.

We have always been here among you. Please do not fear the increase in diagnoses because of advances in medical care. We are not scary, and we are different, but we are no less worthy of love and understanding. We deserve to exist and to be accepted for who we are. We need access to medical care of our choosing. We need a voice that belongs to us, not our parents, caretakers, teachers or therapists. Listen to us. We may not all speak your language. We aren’t a monolith. Pay attention. And learn.

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.