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.

Autism Speaks No Longer Seeking Cure; This Autistic Person Couldn’t Care Less

Yesterday, Disability Scoop published an article stating that Autism Speaks has discontinued its use of the word “cure” in its rhetoric.

Previously, Autism Speaks spoke of unifying the autism community to address what it called an “urgent global health crisis.”

“We are dedicated to funding global biomedical research into the causes, prevention, treatments and a possible cure for autism. We strive to raise public awareness about autism and its effects on individuals, families and society: and we work to bring hope to all who deal with the hardships of this disorder,” the old statement indicated.

Well, that’s good, right? It’s good to not be talking so much about a cure anymore, right?

Well, maybe.

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The new version, which the nonprofit says has been in the works since at least late last year, takes a decidedly different tack.

“Autism Speaks is dedicated to promoting solutions, across the spectrum and throughout the lifespan, for the needs of individuals with autism and their families through advocacy and support; increasing understanding and acceptance of autism spectrum disorder; and advancing research into causes and better interventions for autism spectrum disorder and related conditions,” reads the update. “Autism Speaks enhances lives today and is accelerating a spectrum of solutions for tomorrow.”

Not only does it sound like a lot of nice words couched in nice language that don’t actually mean a thing, but it’s very parent focused (still) and doesn’t actually seem to help actual autistics.  Oh, sure, maybe we’re not being called a national health crisis anymore, so I guess in that respect, it’s a small step forward (more like a reluctant shuffle, a tiptoe).  They’re using the language of the neurodiversity movement in order to become more relevant, I suppose.

But Autism Speaks hasn’t done the basic duty of any organization who has continually royally screwed up.

  • They haven’t apologized for plagiarizing an autistic activist’s work.
  • They haven’t apologized for the atrocity that was “I Am Autism”
  • They haven’t apologized for, as part of Autism Everyday, a new promotional video, for a member of their board talking about committing a murder/suicide on camera in front of her autistic child.  Said member of the board then split off from Autism Speaks to form the Autism Science Foundation.
  • They haven’t apologized for giving the Judge Rotenberg Center a table at their walks, a place that uses electric shocks on autistic people and has been condemned by the UN.
  • They haven’t apologized for treating our parents as heroes and saints for the basic minimum duty of caring for us.
  • They haven’t apologized for the abuse that they’ve hurled at autistic activists that dared oppose them on their webpage and Facebook pages.
  • They haven’t apologized for the many times in which they pretended like autistic activists don’t exist.  Notable examples are mostly on Twitter, where they created multiple tags for different events (#MSSNG  and #AutismSpeaks10 , for example) for the express purpose of celebrating parents and professionals and how they’ve benefited from the existence of Autism Speaks.  Autistic activists fought back, used the tags, and they ignored us and changed the tag they were using.

So I’m waiting. For apologies, for acknowledgments.  Maybe they’re capable of changing, but I’m highly doubtful, and I don’t in any way think that this is anything but talk with no action.  I also think that the proper response to criticisms is to start over entirely, not to ignore autistic activists’ criticisms and just change the words.  That doesn’t mean anything.

In addition, “solutions” sounds a whole lot more like eugenics than “cure” ever did.

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.

Benefits of bullying? Nope.

Today, a fellow autistic person noticed an article published on the Autism Daily Newscast’s website and shared on Twitter/Tumblr/Facebook. It is this article (no fear, the link directs you to the do not link page for the article). Please note that there is a huge warning for the entire article with regard to bullying and abuse and abuse apologism and victim blaming and every horrible thing you can think of.

I clicked on the article and knew when I started reading that the author was beyond a shadow of a doubt the same one I’d interacted with about a month ago on Twitter when the same publication (Autism Daily Newscast) published another horrible piece about forced eye contact. I didn’t even have to scroll to the bottom to know that I was correct.
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Oh and she also said this, too.

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Her article is on the benefits of bullying and I am appalled. Feel free to read it in its entirety, but I am sickened by its content. Essentially, she believes that bullying isn’t ok but if it can’t be prevented (why not? Why can’t it be prevented?), then at least we should look at the benefits of bullying. I find it awful although not surprising that nowhere in the article does she really focus on the victim of the bullying, the autistic kid themselves. No, it’s how can we use this to educate others?

No. Screw that. I have been bullied from the time I was very young. Some in obvious ways (let me throw this baseball at your face and then make it look like an accident) some in more subtle ways (let me pretend to be your friend and then watch cackling as your trust in me as a friend blows up in your face). Some in very abusive ways.

The people who benefited from bullying are the bullies. It’s the kids and adults who chose to humiliate a kid who was slow on the uptake, very trusting, and you ruined that trust. You made it difficult to trust anyone. This is a lifelong struggle.

The adults I told mostly didn’t believe me and the few who did got caught up in red tape in trying to help me. Imagine you’re a 14 year old who has reported that your PE teacher has assaulted you and made inappropriate comments and you’re not believed because he’s a 60+ year old man and you’re just a kid. It’s your word against his and you attend a private religious school and this person is a church elder.

It’s 20 years later and I still have difficulties with those in authority. I still have difficulty speaking up. I have massive issues trusting people. This is the result of bullying and abuse, and it isn’t a benefit.

Karen Kabaki-Sisto, I don’t need your ire and your condescension. I don’t need bullshit articles that tell me that I need to find the silver lining.

And Autism Daily Newscast, I hope you pull this awful article. I hope that you stop publishing someone like this. Stop trying to create “discussion”. Autistic people talk among ourselves about these issues. Maybe talk to us about this instead of publishing self centered, ego maniacal self proclaimed “experts” on autism.

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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.