Monthly Archives: December 2017

Truth

10 Everyday Ways We Shame Neurodivergence

October 26, 2017 by Gillian Giles.

F

Shame is a hard emotion to tease out, it synonymous with emotions like embarrassment or humiliation but it’s not the same- it targets the core of a person’s being. Similarly shaming and even more so the experience of being ashamed in result is even harder to tease out in our everyday actions. I grew up with ADHD that I didn’t really understand that later in life spawned a host of mental illnesses and a host of other othered experiences that I don’t have the language to describe. For what language I didn’t have to explain for internal experience I acquired inadvertently through the ways others would shame me. A lot of the identifiable shame I felt for my neurodivergence was around my productivity, my sensitivity and self maintenance things.

I was acutely aware of the expectation of what I was suppose to be how I was suppose to behave. In response I would Push myself to go past boundaries, to behave differently, to think differently, to be different than what I was. Ultimately reacting on this to be disappointed in not being able to meet this expectation as easily or at all. This is a cycle of shame I’ve experienced endlessly and in evolution with my own non-normative experience; from experiencing that sense of shame for the numbness I felt because of depression, or being to afraid to do things because of anxiety. External shaming became internal shame, largely because my experiences were not neurotypical.

Neurotypical a way of describing one way of functioning amongst many variations of being, but in our society, it is expected that everyone must fit within this norm. People who fit within the norm are described as ‘neurotypical,’ ‘neurotypical functioning’ or just simply labeled as ‘normal.’ It is this norm that sets a standard of conduct for a person’s way of behaving, functioning and existing. People who deviate from the norms of neurotypicalness are shamed, discriminated against or othered. These people and experiences are considered Neurodivergent.

In the simplest terms neurodivergent or rather neurodivergence is word that was created by the disabled community loosely describes the experience of having neurological variations that are seen as outside the cognitive norm. Neurodivergence is normally placed in opposition to ‘Neurotypical’.

The terminology and language of neurodiversity is relatively new and emergent. 1990’s autism and rights activism brought to life new understandings about the ties between autism and other diagnosis that revolved around cognitive neurological functioning.This includes those with developmental disorders, cognitive disabilities and psychiatric disabilities and potentially a host of other experiences

It was this activism that lead autistic activists to coin the term “neurodivergent” and later “neurodiversity” to fight against a neurotypical norm.

Here are 10 different ways in which we have normalized shaming neurodivergence in our society:

1. We shame those who don’t fall in line with typical social behaviors.

Though we all have individual ways of behaving, there is a line where distinction becomes atypical. Social behaviors happen in between people, or really any organisms of the same species. We learn these social behaviors from each other as we grow. They are  a way in which human’s bond. In many ways, in our society, correct social behavior defines someone as human, and is simply called ‘human behavior’.

Failure to comply with the standards of social behavior is automatically seen as abnormal and even less human. Failure to be able to communicate socially in a regular way whether it because of anxiety, impaired communication or the inability to understand conversation is shamed. Failure to show emotions nicely or normally is viewed as ‘inappropriate’.  It is this realm of atypical behavior that we at best call quirky, at harshest call crazy. This includes anything that breaks the social contract of societal norms.

Shaming affects us all but most prominently those who are simply unable to understand or abide by social norms such as those with intellectual disabilities. This reflects in our everyday conversations, snide remarks about an accidental mis-speech, jokes about a friend that may cry too often or get angry too often for our liking, or even in our discomfort around that one person who innately feels ‘off’ socially.

2. We call out their productivity and work habits.

I’ve written about this before but institutions of work, whether it be job or school, highly value productivity because of capitalism. Those who are not able to meet the pace of productivity are shamed, discriminated against or worst, cast aside. On the flipside, socially we tend to tokenize those with above typical ability or with atypical ability due to their own neurodivergence. Many people who aren’t able to keep up with productivity are shamed as lazy or inefficient. Those who are able to but struggle to keep up with workplace productivity are also often ridiculed. Disabled neurodivergent people often struggle to keep up and are forced to work harder in ways that may seem counterproductive, or unhealthy. This is because systems of work are set on a basis of standards, norms and abilities that do not match their own. Often times people displaying neurodivergence have different skills or abilities than those that are expected. Exclusionary systems of accommodations and models based on diagnosis make it even harder for people to access resources that may help them. When we call out people who don’t keep up with work, are unable to do a task, or struggle to do a task, we contribute to a culture of harm that relies on neurotypical, ablest, and capitalist expectations.

3. We mock their methods of cleanliness and organization

Sometimes neurodivergence manifests in different ways of organizing and maintaining cleanliness to different degrees, depending upon one’s ability to do so. Like anyone, those displaying neurodivergence tend to have different levels of cleanliness and ability to organize, the behavior becomes neurodivergent only when it is admonished as extreme or abnormal or dysfunctional. In some cases, these, people who hyperclean or struggle with cleaning have dysfunctional harmful habits. Other times these habits diverge from the norm but are habits that neither unhealthy or harmful. Either way when people do not meet the same norm or standard of organization that you have, shaming them is never okay and will not help either you or them in the end.

4. We yell at them for being generally disruptive or uncontrollable.

Sudden vocalizations, tics and disruptive behaviors are often uncontrollable to both the person with the behavior and the person witnessing it. These disruptions are usually met with hostility and sometimes laughter. Both responses often are hurtful. These interruptions are also often understood as signs of disrespect, comedy or irritation. When coming into contact with disruptive behaviors, instead of taking it as a sign of disrespect or a joke, instead accept the reality that like our environment, people cannot be predicted and we cannot control them. Communicating, understanding and coming to a place of common respect with that person is essential.

5. We view them as anomalies.

In viewing neurodivergence as an anomaly we alienate people with those behaviors and shame them when they do not fit the neurotypical norms. The point of neurodiversity as a movement and way of understanding is to accept the diversity of behaviors, minds and ways of functioning. In pathologizing much of neurodivergence, people are presented as an anomaly instead of a minority. People who are diagnosed for this reason often feel like there is something wrong with them or feel outcasted. In rejecting some of the medicalized perceptions of neurodivergence as an anomaly, we can gain an appreciation and understanding of neurodiversity and shift to focusing on supporting them with things they struggle with rather than focus on othering them through or because of diagnosis.

6. We police their speaking and thinking patterns.

We force everyone to think linearly, judge people by their abidance to grammar rules and discredit their work, thoughts ideas and feelings if they aren’t displayed in a way that is viewed as ‘correct’. Rarely do we embrace and allow for the diversity of different forms of speaking and communicating. In doing this we not only limit our own expression but force people who display that divergence to work twice as hard to convey their ideas or mock them when they simply cannot. The policing of speaking and thinking patterns also has very heavy racist, xenophobic and classist undertones, as those who are affected most by ism’s most often diverge from social norms.

7. We punish them for not making deadlines or meeting expectations.

Although we all must be accountable for our commitments, punishing people who don’t meet them does not address why the expectation was not fulfilled. Many of these expectations are set upon the rigidity of neurotypical ability and lack compassion. Many people who are neurodivergent may need extra time and accommodations to get tasks done. Although most schools and some work places provide accommodations for those with diagnosed disabilities (learning developmental or otherwise), many people who display neurodivergence may not even have a diagnosis or paper work at all. Even those who have a diagnosis might choose not to disclose it for fear of discrimination. Clear honest communication, meeting people where they are, providing accommodations and understanding that different abilities fluctuate are ways to remedy this

8. We normalize and use ableist slurs that target people.

Ableist slurs and words with ablest intentions are intended to shame and mock people with disabilities or behaviors people feel are reminiscent of disability. These slurs most often target people who are disabled and marginalized. Many of these words are also casually applied when people display neurodivergent behaviors. In normalizing these ableist slurs, a message is sent that disabled people and non-abidance to neurotypical norms are something to be shamed.

As long as collective shaming of disability and neurodivergence occurs through the use of ableist language, and the demonization .

9. We demonize them through concepts of dangerousness.

Particularly with mental illness, there is often an assumed dangerousness associated with neurodivergence. A lot of this has to do with stereotypes and sensationalist news reporting. Many people assume that dangerousness and violent crime is a result of a combination of mental illness and individual liberty. Dangerousness is often seen because of neurodivergence or some sort of inherent fault of a person. For this reason, admitting or displaying any sort of neurodivergence carries a lot of stigma, even when being neurodivergent doesn’t necessarily mean being dangerous. Likewise, when neurodivergent people display tendencies that could be potentially dangerous to both themselves and others, they are often punished, demonized and met with carceral solutions. Creating a culture where neurodivergence, as well as divergence that holds potential dangerousness isn’t demonized is important in order for us to destigmatize it and to create an environment where neurodivergent people can feel comfortable enough to reach out when asking for the help that they need.

.

10. We treat disability and neurodivergence as brokenness.

One of worst ways we shame neurodivergence is in treating it as inherent brokenness. Medically disability and divergence is often treated as a hindrance, an obstacle, something to be cured or fixed. This translates to how we socially tend to treat most disabilities in our culture; the disabled, and neurodivergent become an individual fault that needs to be fixed. This creates a false equivalent that, that when a body does not fit neatly into a norm: it is broken;it needs to be fixed.

In the neurodiversity movement, there has been a push for recognition,social inclusion and respect for disability, cognitive difference and neurodiversity. The neurodiversity movement teaches us to fight back against ideas of brokenness, against the idea of neurological norms, compulsory neurotypical behaviors and an intrinsic idea that there is only one right way of functioning. The dichotomy of wholeness vs.brokenness must be ended.

To combat ableism, it is important to begin to recognize the ways in which we shame neurodivergence in people. We must begin to shift away from the idea that there is only one way a mind should function. The variations and diversity of the people, their behaviors and their abilities is never ending. We live in a neurologically diverse world and it’s time that we all take steps to embrace that reality rather than shame it.

Found out this article an interesting read

Advertisements

The struggles of autism and the holidays

A little late but here is a list of overwhelming times and triggers for autistic people during the holidays!!

Christmas 🎄 poppers oh the loud popping triggering sound- poppers are extremely loud and sensory triggering at the festive xmas dinner so if have an autistic adult or young child please NO loud poppers at the table.

Religion- yes yes this is all about the holiday where baby Jesus was born or lighting 8 nights for the Jewish holiday but, let me remind you autistics are not all Christian or Jewish they can be atheist or agnostic. So religion and the whole holy thing is bs to them.

Crowds and communication time ah shit ….

Lower the amount of family you invite to prevent a shutdown / meltdown and make a safe space area so that if your autistic child needs somewhere to relax for he / she can go there to unwind.

Oh and happy late holiday everyone

Let’s get this straight?

“Individuals with ASD/autism” is a phrase that I started paying attention to recently, and it’s frustratingly common in autism research. It’s superficially similar to person first language (eg. person with ASD), but without the point and benefit of person first language: affirming our personhood with language. There’s also the identity first variant “autistic individuals”, which I’ve been seeing more of recently.

I personally think that “autistic person” (identity first language) and “person with autism” both talk about how we’re people, and that’s what’s needed. I also think that a lot of the fuss over person first/identity first is a useless distraction, people should use whatever makes sense in a sentence, and not argue that autism needs to be held at arm’s length from the person. So, the “you can’t define yourself by your diagnosis” and “we need to remember that they’re people, so person first” needs to go, but honestly sometimes “with autism” is easier in a sentence, especially if you’re comparing us to non-autistic people. They’re both fine, just don’t be too insistent on person first when it doesn’t make sense, and don’t tell other people how they should identify. And don’t think of autism as a thing that’s separate from a person like a luggage or an illness, because that’s not accurate.

Having said that, I do actually have a problem with the “individuals with ASD” phrasing. It misses the point of person first, which is making people say that we’re people. Identity first language also makes people say that we’re people. Autistic people, Deaf people, Disabled people are all phrases which say that we’re people. It’s the separation that the self-advocates and autistic rights activists tend to hate, without the emphasis on personhood that the autism parents tend to want.

Individuals isn’t a term exclusively used for people. It’s a word that can be used when you’re talking about animals. You can talk about an individual mouse. Each mouse is an individual. You can talk about say “individuals with SHANK3” and that could apply to a mouse or a human. Saying “individuals with ASD” doesn’t affirm our status as humans, as people in the same way that “people with autism” does.

I think it’s also more prevalent as a way to refer to people with permanent conditions like intellectual disability or autism than people with things like depression. Obviously it’s pretty widely used for lots of conditions though, so I’m not sure about the stats on that. Google scholar search results for people vs. individuals are 3,000,000 vs 3,010,000 for depression and 623,000 vs 762,000 for autism though, which seems to support my intuitions about this. Google scholar results are not the best way to do this though. There’s a good analysis I saw recently where someone wrote an algorithm to go through and check whether person first language was used consistently (for both disabled and non-disabled groups), and something like that is probably what you’d need to get a clear answer on this.

I think the one request from both sides of the person first/identity first debate is to use language which affirms the humanity of autistic people. And that’s a pretty furious debate. Why, if that’s the case, and one of the few things that much of the community agrees on, are researchers ignoring it?

Individuals does sound a bit more formal than people, but many articles do use the word people, so it seems ok by academic writing standards. All the cases where “individual” is used would seem to fit “person” equally well. Of course, if you’re talking about people participating in a study, “participants with ASD” or “autistic participants” may be the most accurate phrasing.

Anyway, this seems like a place where academia has kind of missed the mark on language, and I really can’t figure out why it is. I can’t see any good reason not to affirm the status of autistic people as people in academic writing, especially when it’s such an issue for us. I might have missed something though, so if you can think of an actual reason to use this kind of language then please tell me. If it’s a thing of trying to sound more formal or more intelligent, then please don’t do that at the cost of dehumanisation, however minor.

Share this:

Press ThisTwitterFacebookGoogle

Reblog

Like



3 bloggers like this.

Categories: Autism research, Autistic rights | Permalink.

3 THOUGHTS ON ““INDIVIDUALS WITH AUTISM” – PERSON FIRST VS. IDENTITY FIRST LANGUAGE AND THE WORST OF BOTH WORLDS.”

Leave a comment

Actually Autistic Blogs List

November 15, 2017 at 2:01 am
Alex, your blog is currently included on our Actually Autistic Blogs List (anautismobserver.wordpress.com). Please click on the “How do you want your blog listed?” link at the top of that site to customize your blog’s description.

Thank you.

Judy (An Autism Observer)
Reply

Actually Autistic Blogs List

November 17, 2017 at 10:16 pm
If you want to customize your blog’s description, please click here. Thanks.
Reply

Eve Hinson | BadassActivist

November 17, 2017 at 1:21 am
Reblogged this on American Badass Activists.
Reply

Leave a Reply

Logged in as tictoc11. Log out?

Comment

Notify me of new comments via email.

Notify me of new posts via email.

Post navigation

← Previous Post

Follow Autistic Alex

ARCHIVES

November 2017

April 2014

March 2014

META

Log out

Create a free website or blog at WordPress.com.

Top

<img src=”https://pixel.wp.com/b.gif?v=noscript&#8221; style=”height:0px;width:0px;overflow:hidden” alt=”” />

Skip to toolbar

My Site


tictoc11’s Blog
tictoc11blog.wordpress.com

Stats

Plan
Free

Manage

Site Pages
Add

Blog Posts
Add

Media
Add

Comments

Personalize

Themes
Customize

Configure

Sharing

People
Add

Plugins

Domains
Add

Settings

WP Admin

+ ADD NEW WORDPRESS

Reader

Streams

Followed Sites
Manage

Conversations

Discover

Search

My Likes

AllUnreadCommentsFollowsLikes

TIME
OLDER THAN A MONTH
COG


Comment

FireBrightStarSoul commented on And again I have to post this cause people don’t get it!!!People who follow my blog and Facebook page for autistic women, other aspies.


Comment

ReplyFireBrightStarSoul replied to your comment You can if you want It’s not an option. I just copied the link to send them to yours and an excerpt.


Comment

ReplyFireBrightStarSoul commented on And again I have to post this cause people don’t get it!!!Hells yes, I need to be able to reblog this!

FireBrightStarSoul liked your post And again I have to post this cause people don’t get it!!!


Add

FireBrightStarSoul and 8 others followed your blog tictoc11’s Blog


Comment

Srijana commented on What is chelation ?Word press does teach new things


Stats Alt

You’ve made 100 posts on tictoc11’s Blog.

Alysha Marie and 2 others liked your post Invisible disabilities 


Stats Alt

You’ve received 10 likes on tictoc11’s Blog

BlueFishh liked your post Executive Functioning

The End

tictoc11
@tictoc11Sign Out

Profile

My Profile

Account Settings

Manage Purchases

Security

Notifications

Special

Get Apps

Next Steps

Help

Log Out

Follow

Autistic catatonia and what is it?

Autistic catatonia is a rare type of disorder[1] that affects roughly 10 percent of all adults with autism spectrum disorder. Most of them are not severely affected but a few exhibit stupor and severe excitement, which is the most extreme form of the disorder. Full expression of excitement could be a sign of comorbid Bipolar disorder but more research is needed.[2]

More than 40 symptoms has been identified to be a result of the disorder, but some of the symptoms overlap with those of autism spectrum disorder, making diagnosing difficult even for a seasoned professional. In a few cases stupor and hyperactivity can continue for weeks or even months.[citation needed] During the excitement phase individuals show combativeness and can have delusions and hallucinations and can also pose a danger to themselves or others and can make marked destruction of property.[citation needed].In the later stages of medium and even more in the severe and if left untreatead lethal state they will also experience autonomic instability! (Behav Sci (Basel). 2015 Dec; 5(4): 576–588. Published online 2015 Dec 9. doi: 10.3390/bs5040576

Childhood schizophrenia increases the risk for autistic catatonia later in life dramatically. There seems to be a common font of brain pathology for psychosis, catatonia and autism.[3]

Cdc ‘s terminology says

As Lydia x z Brown puts it as …..

How is the Center for Disease Control (CDC) or any Health and Human Services (HHS) agency for that matter supposed to produce any materials about *whole swaths* of their work???

Even if you happen to be fairly conservative and you oppose things like (a) rights for transgender people or (b) access to abortion (in both of which cases I really despise those beliefs, but, OK, you have the right to hold them, I guess?)… I’m pretty sure that you recognize that (a) transgender people exist; and (b) fetuses exist, including when they are carried to term and then born?

OK so here are my extrapolations of what you think these words stand for and why you’ve banned them:

(a) diversity: because you think it means “white genocide.”

(b) fetus: because you think it means the allegedly scientific dehumanization of “unborn children,” and therefore implicitly promotes a pro-abortion, anti-life agenda

(c) transgender: because you think using it validates our identities/experiences, and you’d prefer to deny that we really exist, since clearly we must just need conversion therapy instead

(d) vulnerable: because you think it’s a stand-in for the even scarier “marginalized” or “oppressed” or “minoritized,” and therefore recognizes that there are power dynamics/power differentials in society, which you believe don’t exist or are extremely minimal or even reversed

(e) science-based or evidence-based: because you don’t believe in science because don’t we all know that all colleges and universities aside from a few explicitly very conservative ones have a far-left extremist bias

(f) entitlement: because it’s what you believe every social program is, except, wait, I don’t get you would ban this word when it’s literally YOUR description of what things like Medicaid and Social Security are … ????