autistic people are speaking for ourselves. are you listening?

Having been forced to deal with them and organizations like them, I can safely say “No.”

It is obscenely worse.

You see, any idiot can look at things like “we need a cure” and their anti-vaccination advocacy and realize how ridiculously stupid that it. 

But that’s not what they sell to children’s hospitals. Instead, they push extremely unconventional medications to “help” autistic children (usually by sedating them into a catatonic state). I mentioned earlier that Risperidol eases overstimulation, but Autism Speaks doesn’t like Risperidol because it’s not controlling enough.

Autism Speaks absolutely loves “treatments” and “counselling” based around controlling everything autistic children do. Stimming, self-coping mechanisms, even strange and oddball quirks like kids who wear gloves everywhere, all of these are taken from them and doled out as privileges. It’s all about turning anything an autistic child likes into something they can control.

They treat these children like fucking animals and really enjoy forced isolation as a punishment. The IWK has several “Secure Isolation Rooms” that they will place autistic children in their care into for hours at a time unsupervised when they start acting out. And not “having a meltdown and might accidentally hurt someone” kind of acting out, even just mouthing off or getting lippy with a nurse.

I am personally convinced that the whole “cure” motto is a sham, because studies into Autism long ago disproved the theory that it was something that needed curing. Autism Speaks behaves more like a eugenics organization. And they are slippery bastards about it too. 

I’ve had the displeasure of having to interact with them directly because they have such a stranglehold on Nova Scotia’s youth mental health that any counseling group inevitably gets calls from them. Speaking to them and hearing the tone with which they spoke about these poor kids made my fucking skin crawl.

If you’re an autistic child and they’re talking to your parents or counselor about you, they won’t even use your name. The Child, The Patient, and The Boy/Girl are all common ways to refer to these kids. On several occasions they’ve referred to some kid as “it.”

I’ve said before that Tumblr especially doesn’t quit know what Autism Speaks is, and that’s because their public persona is very carefully crafted. Their reputation is so cartoonish that doctors who don’t know better won’t believe it, and so they swoop in with a lot of pretty language and faux-politeness. The skeezy, contemptuous way they behave when they think they’re doing business is enough to make you fucking vomit.

You quickly learn why so many hospitals willingly work with them. They are very good at getting their claws into health care organizations because they have this almost sinister “Friendliness” to them, and when you combine this with the fact that a lot of child psychologists have absolutely no concern for the actual well-being of children (just making the parents happy so they continue footing the bill) you have a recipe for a truly horrifying experience.

I can’t fully articulate just how sickening they are. Take however bad you THINK they are, multiply it by a hundred, and then think about how Quentin Tarantino would inflate that to make a movie out of it.

That’s how fucking gross and vile they really are when they think nobody is watching.

low supports needs autism :

- not always high masking

- not always able to mask at all

- not always fully verbal or verbal at all

- can be very visibly autistic

- can be diagnosed early in life

- can be in disability support services

- very common to not be employed or to not live alone or to not know how to drive, etc.

- does not mean "no support needed"

- does not mean "basically a allistic person"

low supports means low compared to other autistic people! still need a lot of support compared to a neurotypical able bodied person.

Because that method of trying to "unmask" will always fail, bc it hinges on the assumption that there is a core underlying Self that is being Covered Up with the mask.

In reality, one does not have a chance to develop a true "self" due to the circumstances of their development. this is broadly true for almost all humans (SHOW ME AN UNALTERED TRUE HUMAN SELF,) because of the heavily social nature of how our selfhood intersects with other people's perception of us, but in some people it is much more marked and detrimental than others. What I think is the issue at hand is not the Self, but rather the internal experience. The Self is a construction we build to understand ourselves as beings, and it is heavily informed by our understanding of our own experiencs. understanding of those experiences is the actual issue. Being able to identify and name the effects that moving thru the world have on you. And teasing out how those acknowledgements of one's internal experience have been punished out of us.

To recover, you literally need to manually learn skills that most people learn as a toddler

You need to learn what makes your body uncomfortable, and what to do to fix it

If you are high-masking, that usually means that you have learned to ignore every distress signal your body sends unless it is a distress signal that a neurotypical person would recognize. People have likely been unintentionally gaslighting you about your lived experience your entire life

If you feel bad or panicked for no reason, stop and try to pay attention to your body. Are you tense? You are likely feeling physical pain somewhere. If you've been gaslit about your pain your entire life, you might not be able to identify it.

Go through a sensory checklist.

SIGHT: Try closing and covering your eyes. If this gives you relief, the lights are probably too bright. You may also need differently-colored lights

SOUND: Cover your ears. Does this give you relief? If so, you may need earplugs or noise canceling headphones. You may also benefit from a neutral or pleasant background noise, like soft music or brown noise.

TOUCH: Are your clothes uncomfortable? Your chair? Your body? Do you feel greasy, like you need a shower? Do you need softer, sensory-friendly clothing?

TASTE: Do you need to brush your teeth or tongue? Would chewing on something help?

SMELL: Is there a strong or unpleasant smell in the room? Do you need to clean or empty a trash can? Would an air purifier help? Would a pleasant smell like a candle help?

INTEROCEPTION: Are you hungry? Thirsty? Tired? How is your posture? Are any of your muscles tight or sore? Scan your body slowly from head to feet, tensing and loosening each group of muscles. Going for a walk or doing a series of quick stretches may help a lot.

Learning how to do this stuff is not intuitive, if you've had an entire lifetime of gaslighting telling you that everything hurting you isn't a big deal and you're being dramatic over nothing.

This takes time, it takes work, it's not intuitive, and it's hard. Most people forget how hard it is, because they learned this as toddlers.

there are a lot of things i appreciate about being autistic but i hate having an invisible wall between me and most other people. it's getting thicker and that feels pretty bad.

it's worsening my social anxiety too which makes me clam up around people I'm not already close with. no idea what to say until long after the awkward convo ends.

i wish it was easier to be autistic. i wish i could easily ask acquaintances to be direct with me (without first laying tons of groundwork to help them see the benefits) and have a baseline trust that when they say they will, they actually will speak up if they want something to be different. and that they'll work on their ability to hear direct requests for something to be different without immediate defensiveness or shame.

i want it to be normal to have direct and honest conversations that involve disagreement or requests to change something without it feeling like an attack to most people (bc that's one big reason ppl DON'T speak directly. they think it would be mean!!)

i wish i could tell people there's no secret hidden meaning to what I'm saying and be believed.

i wish a flat affect wasn't considered rbf and that I could just tell people with words how I actually feel and be believed.

a comic about verbal words :3

A well informed autism self diagnosis is just as valid as a psychiatric diagnosis. Additionally, under the given circumstances it is safer, most probably less expensive and you don't need to wait for any appointment.

10 screenshots from a twitter thread by @drdemonprince with white text on black background.

The thread reads as follows:

I hear from many trans & nonbinary people who are actively seeking an Autism diagnosis. My advice is RETHINK THIS. Restricting Autistic people's access to gender affirming care is a major TERF talking point. As legal attacks on trans healthcare mounts, a psychiatric dx is a risk

The high overlap between Autism & transness was one of the main "concerns" JK Rowling rose in her "TERF Wars" blog post. Numerous fearmongering anti-trans articles influenced by TERFs have raised the issue since. if youre trans now is not a good time to seek a formal Autism dx.

An Autism dx does not unlock access to any beneficial therapeutic treatment, bc there is no "treating" Autism. Formal diagnosis makes us vulnerable to legal & psychiatric control and gets our competence challenged -- you dont need to subject yourself to this. diagnose yourself

I am close with dozens and dozens of Autistic people, and I have no idea who has a diagnosis and who does not. It does not matter. There is no reason to ask, no reason for others to care how someone identifies and how they arrived there -- all that matters is community support.

also if you cannot afford to pursue a lengthy & expensive lawsuit, it's unlikely a formal diagnosis will actually protect you from discrimination at work, in school or in housing. if you have the means great, but most don't. disclosing disability can be more risk than its worth.

if you need a dx to access resources such as disability benefits or extra test time, by all means go for it, but be cognizant of the potential costs. you could be denied for surgery, lose control of your assets, be found legally incompetent, lose custody of your kids...

Tweet replies to this thread:

By Greysquirrel @/treerat93

My autism dx was forced on me at age 2 and kept me out of the military in my 20s. It’s been nothing but destructive. I was beat up in sped and believed myself to be stupid my entire life because of it. I can’t even buy life insurance.

By Emily Johnson @/emily_rj

In some states, people with autism face being denied organ transplants, are at higher risk for forced sterilization and/or denied contraceptive and reproductive care, and have a higher risk of police brutality I considered this and decided informal diagnosis was best for me

By AK Faulkner is sweet and...

Yes / No

*Prosopagnosia is the inability to accurately distinguish facial features. May range from mild confusion between features to total face blindness.

When looking through recent autism research, I found this very interesting and useful article

It says that research into the sensory aspects of autism has been hamstrung by a basic ambiguity in terminology. Research has used "sensory sensitivity" interchangeably to refer to multiple different things:

how stimuli feel to the person

how the person reacts

activity in the brain caused by the stimuli

Many research articles on autistic sensory issues use the word reactivity to describe sensory sensitivities. "Reactivity" refers to behavior, how an autistic person outwardly responds to sensory stimuli.

Applied Behavior Analysis (or ABA), the main "therapy" used to "treat" autistic children, originates from behaviorism, a school of thought in psychology which holds that thoughts, feelings, and internal experiences can't be objectively measured, therefore studying them is not science. Only behavior can be studied scientifically.

As a therapeutic practice, ABA works by using operant conditioning techniques on autistic people to increase "desired" behaviors and decrease "undesired" behaviors. Change in behaviors being exhibited= treatment. That's behaviorism.

I am conscious of a certain horror in behaviorism. Imagine that someone is screaming in pain. The pain is an internal, subjective experience; the screaming is a behavior.

Now, look again at my three bullet-points describing the terminology problem in autism research. "How stimuli feel" is the pain. "How the person reacts" is the screaming. Researchers have been using the same words to refer to both pain and screaming.

This potentially can cause multiple types of erroneous assumptions:

By stopping the screaming, you are stopping the pain.

If someone is not screaming, they are not in pain.

The screaming is the problem. There is no such thing as pain.

In my (autistic) opinion, autism is fundamentally a disability or difference of internal experience. Autism research has an enduring problem with the concept of internal experience. Autism is described as a collection of "wrong" behaviors, which I guess is useful enough for identifying autistic people, maybe, but it contains no insight. I believe that autistic behaviors are linked to autistic experiences.

I also believe that non-autistic behaviors are linked to non-autistic experiences. I cannot experience what it is like to be non-autistic, but I can observe non-autistic people being relatively unresponsive to stimuli and the world around them, and withstanding overwhelming environments without severe consequences. I observe their genuine, non-malicious confusion at my daily pain, exhaustion, fear, and stress, and at my needs and behaviors. I think that non-autistic behavior makes sense within the experience of being non-autistic.

So imagine that you get home after a long day and your roommate is throwing an extremely loud, raucous party. There are at least 50 people crammed into your apartment, engaged in loud, drunken karaoke and doing lines of coke off of your bathroom sink. You go upstairs and lock yourself up in your bedroom, and no one bothers you but you can still hear the noise downstairs.

In this scenario, your roommate has everything perfectly cleaned up and pristine by morning, and you are not opposed in principle to karaoke or cocaine or 80's pop hits or having 50 people over. BUT, it would still be viewed as an EXTREMELY reasonable boundary to set with your roommate to say "hey, please let me know ahead of time when you're planning on throwing a wild party at our house."

That's intolerance of uncertainty.

Because for an autistic person, a trip to Walmart or an appointment or going to a seemingly benign new place might be similar in intensity to a non-autistic person's experience of coming home to find 50 people singing extremely loud karaoke in their house.

Non-autistic people get extremely stressed from surprising changes and lack of control in their environment too, it just happens at higher intensities.

when I say autistic people can play baseball, I’m not talking about “this pro pitcher has a special interest” I’m talking about how the local little league team should take a chance on a nonspeaking kid with a care aide who comes with them to practice, so they get the experience of hanging out with friends and doing a group activity too.

when I say autistic people can date, I’m not talking about people who say they have “a touch of the ‘tism” on their hinge profile. I’m talking about the rights of adults in day programs to hold hands. The rights of institutionalized people to have sex. The rights of queer teens in life skills classes to get sex ed that applies to them.

a couple recs!!!: mel baggs's poetry blog!!

archer jay doesn't have a separate poetry tag but does post poems occasionally ,

nonspeaker library is an entire archive of writing by nonspeaking autistics