Where do we go from here?

This weekend, I attended Autistics Present Symposium in Bellevue, Washington.  It was an amazing time, and I got to listen to and meet a bunch of people that I’ve admired for years. I’ve been to plenty of autism conferences before, but having an autistic space where the experience was centered on us was something new entirely.  It wasn’t something I knew that I needed until I was there. I’ll definitely be back next year.

One of the workshops I attended was focused on writing and finding autistic characters written by autistic people, led by the wonderful Neurowonderful. I’d been thinking about getting back into writing fiction after a longish hiatus, and their workshop made me think even more about doing so, so that’s something that will be in the works in the next few weeks.

In addition, though, it made me realize how much I had neglected this blog.  I started writing back in 2012, and I have never been a weekly or sometimes even monthly updater here, but I definitely haven’t written anything since April 2017.  That is entirely too long, and I definitely need to change that.  I take to Twitter quite a bit nowadays, but this blog is often more accessible for people to find out information about autism, what it’s like to be an autistic parent, and especially what it’s like to be an autistic person closer to 40 years old than to 20 or 30.

I posted on my personal Facebook yesterday that I could do a whole blog series on my blog search terms alone and probably come up with a year’s worth of topics to talk about.  I think they would help younger autistic people figure out that it is possible to have a successful life and be autistic, and it’s possible to do so if your autism intersects with other parts of your identity, and how to manage that.  I haven’t found the answers to every question myself, but I’m working on it, and I want to share that experience with you, my readers.

So for now, I’m committing to at least one new post per month.  There will likely be a post after this one is published, at least within the next week, because I need to explain how my life has changed since April 2017, because it has changed drastically in some very, very good ways.  I really want to commit to posting once a week, but I cannot make that promise because of time management, executive functioning and the like, but I can promise that I will be writing at least once a month.  That is an achievable goal for me.

So until next time, thank you for reading. I hope to make this a space where folks can ask questions and gain a better understanding of what the world is like for me and possibly other autistic people like me.  If you have any questions, you can always email me at thecaffeinatedautistic@gmail.com.  Thanks so much for reading!

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Marco Rubio and autism – a history lesson

The I may write more on this at a later date, but for now, I’m republishing something I wrote elsewhere on the Internet back in 2013.

These words and thoughts have consequences, especially considering the confirmation of Betsy DeVos and Rubio’s hand in that.

Again, more on that at a later date.

I saw that a few other people had included their form responses, so I thought I’d include mine.

Dear <my name>, 

 Thank you for taking the time to contact me about autism awareness, research, and education.  I understand this is an important issue impacting many people in our country, and I appreciate hearing your thoughts about ways to help those with disorders along the autism spectrum.

This completely ignored the fact that I actually explained that I AM AUTISTIC AND SO ARE MY KIDS, you know, so I’m not just this bystander concerned about “ways to help those with disorders along the autism spectrum”.  Also, how clunky is that phrase in quotes? Good Lord.

 As you know, researchers and medical professionals across our nation are committed to finding a cure for autism, and creating ways to help those with autism spectrum disorders control and manage symptoms through medications as well as changes in their lifestyles.  The federal government has historically funded opportunities for biomedical research on autism through the National Institute of Mental Health at the National Institutes of Health (NIH), as well as numerous other institutes and health centers, and through grant opportunities aimed at autism research, education, awareness, and support services.

What the everloving fuck.  So I write to you explaining that I don’t want to be cured, that I don’t want to be some horrific entity that you should want to eradicate or cure, and the first thing you talk about is how committed you are to finding a cure? Well alrighty then.

I mean, many of us have conditions RELATED to our autism that can be helped by medication, so that’s valid.  I want all of us to have access to medication and to health care.  But it sounds like “medication fixes autism” to me and I don’t think that’s even close to the case.  I know that there are parents who put their kids on so much medication that the kid has no choice but to suppress the urge to stim and to sit quietly, but that’s not natural.  Not when you’re autistic.And it’s very often harmful not only now, but later in life.

“Lifestyle changes” sounds a lot like “therapy to make you normal”.  Because in most cases, that’s what is happening.  

On May 26, 2011, Senator Robert Menendez (D-NJ) introduced the Combating Autism Reauthorization Act (S. 1094) in the U.S. Senate.  This legislation would amend the Public Health Service Act to combat autism through research, screening, intervention, and education

Interesting that three out of four of those really sounds like it’s try to fix or eliminate people like me, isn’t it? Research into what? Ways to target autism before birth? Through genetic screenings? That’s what the screening part talks about, I believe, unless we’re talking about the M-CHAT, which is a test given to diagnose an autistic person (most often a child).  Intervention, ah, again, so we can pretend to be normal, and be bad version of ourselves, instead of you know, just being the best autistic people we could be.  Now education? That’s something I could get behind.  Educating professionals, including doctors, teachers, mental health professionals, etc etc etc, about what it’s like to be autisitc, and educating the community so there’s no longer a fear of autism? That I’d get behind 100%.  But since this is part of the COMBATING AUTISM ACT as if we’re in some fucking war against people like me, well, I’m going to guess that it doesn’t have anything to do with anything but fearmongering, yet again.

Identical legislation has been introduced in the U.S. House of Representatives (H.R. 2005) by Congressman Christopher Smith (R-NJ).  Since this legislation will ensure the continued success of autism research and targeted programs, I officially cosponsored the Senate version of the Combating Autism Reauthorization Act.  The House-introduced version of the Combating Autism Reauthorization Act (H.R. 2005) was passed in the U.S. House of Representatives on September 20 and in the U.S. Senate on September 26, and the Combating Autism Reauthorization Act was signed into law by President Obama on September 30, 2011.

 Federal funding for the NIH is currently appropriated by the Consolidated Appropriations Act, 2014 (H.R. 3547), which funds the federal government until September 30, 2014, and was passed by Congress on January 16. I could not support this trillion-dollar spending bill because it again postponed any significant action on pro-growth spending reforms to address our nation’s debt crisis.

 I will continue to keep your thoughts regarding autism awareness, research, federal funding and education in mind during the 113th Congress.  Again, thank you for contacting me about this matter, and I welcome any thoughts or input you wish to share in the future.

Sincerely,

Marco Rubio
United States Senator

You didn’t listen, sir.  You didn’t listen at all.

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.”

Four years

Content warning : Autism Speaks, filicide, propaganda, brief mention of rape and death threats

I realized not too long ago that it’s been four years since I wrote my first post about Autism Speaks.  I have two major ones that exist, both of them available under the “pages” tool on my blog here.  Feel free to read them if you have the time or the stomach to do so.  It’s a lot, and though there’s quite a bit that needs to be updated (notably that there are now two autistic board members), most of the points still stand.

Those posts are rich in information, most of it fairly dry and straightforward.  The point of those posts was to have something to go to when someone asked me “but why don’t you like Autism Speaks?”.  The first ever post I made on the subject was on my tumblr blog four years ago, and it was in response to someone asking me exactly that question.  After a week of the same question repeatedly (after the first ask had been buried under other posts), I decided to make it a post.

The research on that was harrowing.  It was a lot to take in, it was difficult to read.  I was committed to making it as detailed as possible and I tried my best to not impose too many biased and outlandish statements within it.  I can’t say I was entirely successful, but the me of four years ago was far more intense about these sorts of things than the me of today.

And then I edited that post.  And I edited it again.  And I realized that I was adding so much to the post that I may as well make a second one.  So the updated Autism Speaks post came into existence just two years ago.

I don’t think I have ever really talked about the impact of those posts on me, what it feels like to not only have them floating around the internet, but to have been linked in articles in major news outlets.  Nor have I talked about the way that Autism Speaks makes me feel.

So this is what I’m doing now.  This isn’t edited for clarity.  It isn’t particularly newsworthy or perfectly constructed.  But this is me.

I feel heartbroken.  Every time I hear the words “epidemic” or “tragedy” or the words “until all the pieces fit” along with the imagery of a puzzle piece being forced into the wrong shape, it breaks my heart.  It makes me think of all the times when well-meaning family and friends tried to make me be something I’m not.  Less autistic, more neurotypical.  Maybe even sometimes more straight (though that’s a different story in itself).

Every time a parent whose clothing is covered by puzzle pieces or autism “awareness” slogans tells me I don’t count because I can speak, even while I’m stuttering and turning red and unable to continue and they think they’ve won the fight…my heart breaks.

Every time an autistic activist receives a hateful comment, a rape or a death threat, it makes me want to scream.

Every time I read about places like the Judge Rotenberg Center, or posts about people who have been subject to 40+ hours of ABA therapy a week since they were two years old (or younger!), it makes me want to scream .

Every time I see Autism Speaks release yet another pile of steaming bullshit, whether it’s in the form of a celebrity benefit or those damn gold bunnies, or some ridiculous computer simulation of a person who avoid eye contact (as if that’s the absolute worst ever), I get angry.

I am a highly empathetic person.  I know that word empathy is thrown around and used improperly and it’s difficult to pinpoint exactly what it means when you’re an autistic who has a lot of empathy.  But I do, and I’m affected not just emotionally but physically by other people’s pain, and it hurts.  Every time one of us hurts, I hurt.

And then I see the result of all this propaganda that Autism Speaks puts out, the flat out denial of our humanity.  The fact that every time one of us is killed by our caretakers, that the number one comment will be about services, services, services.  That it doesn’t matter that we are people deserving of love and respect and life .  We are problems to be solved, and that can only happen through services.  So many excuses, and yet so many of these parents had access to services, were filthy fucking rich, and they still killed their kids.

I know this – that the only time Autism Speaks has directly commented on a parent killing their autistic kid was the attempted murder of Issy Stapleton, and how Autism Speaks called it “an unfortunate incident” and refused to directly comment on Kelli Stapleton and how she tried to kill her autistic daughter.  Is it because she was an autism mom blogger and well known in that community? I think so.  I can’t prove that, but I have a pretty good instinct about it.

I am heartbroken about it all.  I see every single parent that tries to explain these things to me as if I don’t know, as if I just don’t understand.  See, because even though I am one of them (a parent of autistic kids), I’m not really one of them.  I’m “other”.  I know many people like me (autistic parent of autistic kids), but the “autism parents” like to think that we don’t exist.

I do understand.  I understand the fears.  I understand the frustration, especially if you’re a single parent.  But I don’t understand how a person disrespects their child, takes away their autonomy again and again and again, refuses to explain to them that they’re even autistic, and makes them feel so very broken. I don’t understand parents who, instead of accepting their child’s neurology as who they are, spends time and money on Autism Speaks’ walks to “find a cure”.  I don’t understand parents who go there with their children (both actual children and their adult offspring), who speak as though their kids aren’t even there or capable of understanding, and who talk over Autistic advocates who try to explain the problems with Autism Speaks.

I get it.  It’s the first resource that doctors offer upon a diagnosis being confirmed.  I get that.  I know that I’m much more informed and open-minded than a lot of people.  But when I read Autism Speaks’ “The First 100 days”, I felt sick to my stomach.  These people were describing my child? How dare they! How dare they describe her with such foul words? How dare they dehumanize her?

Respect your kids. Respect yourself.  And Boycott Autism Speaks.

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.

The Caffeinated Autistic celebrates 1000 Ausome Things

I meant to write a post on my birthday (a week ago today) and failed. April is always a difficult month for a variety of personal reasons, but it’s become even more so with the knowledge that April is Autism Awareness month. I have seen far too many blue puzzle pieces or rainbow puzzle ribbons.

But today isn’t about that. Today is Autism Positivity day, and I’m going to tell you the best things about being autistic, for me.

1. Obsessions. I never really understand why people consider this a negative trait, and refuse to allow autistic children to indulge in their obsessions, rather than using them as an opportunity to learn (or even maybe as a reward if it’s difficult to use it in education). If you meet me in person, I can guarantee you that at some point in time, I will launch into an infodump about why Sherlock Holmes is autistic, why all the female characters are amazeballs, why Susan Pevensie’s ending was the saddest thing I’ve ever read and why I hate C.S. Lewis for what he did to her, and why platonic friendships in all sorts of media aren’t specific to gender and are amazing. Just to name a few.

2. Stimming. There is angry stimming and panicky stimming, and the cause of these is no fun, but stimming itself is AWESOME. And I’ve handflapped and rocked in happiness and contentment and drew patterns over the skin of a fellow autistic person. And co-stimming with another autistic person is by far one of the best things to do.

3. Another way of thinking. This isn’t very concrete, but I find more and more that I think I’m thinking in a similar manner to a neurotypical person, but then I mention what I’m thinking out loud and yeah, I’m not. But so many times, this means I have the solution to a problem that no one else thought of, and sometimes? This makes the life of an autistic child better because their parents get it because I was able to articulate it.

4. Repetition is amazing. This applies to so much and has to do with echolalia as well as repetitive movements like stimming, but also? It is why I am good at my job. I’ve been employed for just 2 1/2 months, and you’d think that isn’t even long enough to be good at my job, but I’ve already been training people. I’m fast and accurate and no one at my job but me likes being in the back because it’s boring, and yeah, when it’s slow, it is, but it’s repetitive and perfect and lovely.

5. Language. Language and words are fantastic and I’ve been an avid reader since I learned right before my 4th birthday – when I apparently taught myself. I was reading at a post high school level in the 2nd grade, and I was often in trouble for trying to read novels behind my science textbooks. I majored in English in college, and even taught it myself for two years (a job that I found too stressful because of red tape and paperwork). I love words, and I love what they can do, the images they can evoke, or the things they do to my ears when they’re spoken. There’s a segment from an episode of Sesame Street that includes the phrase “lilting Liliputian lullaby”, and isn’t that just the best thing to say and hear?

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.