Page 1 of 1 [ 10 posts ] 

ASPartOfMe
Veteran
Veteran

User avatar

Joined: 25 Aug 2013
Age: 66
Gender: Male
Posts: 34,249
Location: Long Island, New York

02 Mar 2023, 1:11 pm

Salon

Quote:
What does it mean to be autistic? In theory, one would presume the people most qualified to answer that question are those who are autistic.

In practice, however, those who are on the spectrum — like this author — often find that our neurodivergent traits are questioned by strangers.

"I get frequent complaints about my autistic traits and pretty much all of them tend to follow a certain false logic," explains Max Perlin, a 16-year-old high school sophomore in Maryland whose mother Kimberly is a mental health therapist. Perlin told Salon in writing that people will tell him that he must not be really autistic if he does not fit their narrow view of how autism is "supposed" to look.

Perlin's experience is familiar to me. Growing up autistic, I was often told that if I simply explained my disabilities to people, they would understand and treat me as an equal. Since in part the autistic condition involves differences in how people communicate with each other, the end result of being autistic is often embarrassment and rejection for the autistic individual.

Like most autistic people, I have on countless occasions attempted to directly and clearly communicate the struggles of being autistic to neurotypicals — that is, people who are neither autistic nor otherwise neurologically atypical.

"There is this general feeling that we can't possibly understand what we actually experience because we don't have theory of mind... It's also a way of not allowing us to advocate for ourselves."

The good news is that, in my experience, many neurotypicals are sympathetic and accepting. Yet what about the countless occasions when an autistic person explains their autism to a neurotypical and the neurotypical takes it upon themselves to disagree? What if an autistic person tries to encourage understanding by dispassionately stating facts, and a neurotypical with tremendous certainty spews a series of incorrect takes — with perhaps a soupçon of condescension?

Unfortunately, this is not a subject on which I need to speculate, because it happens all the time. Indeed, many autistic people with whom I spoke attested to this common experience, of being invalidated by neurotypicals who believe that they have the right to tell autistic people whether or not they are actually autistic.

"Basically if you aren't a stereotypical autistic person you cannot use it as an explanation for your behaviors," Perlin told Salon. "Some examples of this logic in specific responses I've gotten are 'Well you're not that on the spectrum' 'You're only a little autistic,' etc. All these are followed by them dismissing my explanation."

Generation Z is not alone in experiencing ignorance toward autism. Stephanie Hastings, who was diagnosed later in life than Perlin, identifies as a member of Generation X's "gifted and talented kids," to use Hastings' own words.

Yet even her career successes have not spared Hastings from doses of neurotypical ignorance. Because she is described as "verbally capable," Hastings finds that others are prone to telling her that her autism can't be that bad, may not be real, or perhaps "could be cured with some fitness magic nonsense they heard on talk radio."

"Or they have someone in their family who is also neurodivergent but maybe they're non-verbal so it's a small box we must fit in for any consideration or grace," Hastings pointed out. She added that, because she is a woman, Hastings faces an additional layer of ignorance.

Like Hastings, Danielle Lynn Fountain is a successful professional — in her case, she is a neurodivergent staffer at Google and author of the book "Ending Checkbox Diversity: Rewriting the Story of Performative Allyship in Corporate America." Yet despite her impressive achievements, she still has to fight autism stereotypes.

"When I first 'came out' as autistic, sharing my diagnosis with family and friends, a common response was 'you're not autistic, you're just lazy sometimes,' attributing my masking/executive functioning burnout to a laziness 'common amongst millennials,'" Fountain wrote to Salon. "Along the same vein, when I disclose my neurodivergence, a common response is that if I only paid a little more attention, used a planner or to-do list, or invoked other tools of productivity, the 'symptoms' I claim are part of my neurodivergence would actually disappear."

It is tempting to say that this trend of neurotypicals "ablesplaining" to autistic people comes from a place of good intentions, but sometimes I wonder. In my career as a writer, I think of how the term "autist" is often used as an insult (I've been singled out by trolls as an "autist"), especially by people who disagree with the ideas in my articles. Conversely, some trolls will pick apart the exact nature of my own individual autism as they perceive it, often while discussing their own neurodivergency experiences. These seemingly disparate acts — one that uses autism as an insult, the other invalidating or minimizing others' autistic experiences — are both manifestations of a culture that habitually marginalizes people based on their neurological status, and yet through that process acknowledges how a degree of social power can be reclaimed by openly embracing one's own neurodivergency.

Could these dynamics drive neurotypicals when they doubt an autistic person's autism? A brief foray into psychological theory may help illuminate. Some autism advocates argue that instead of defining autism as a disability, experts should instead refer to a "double empathy problem."

If the double empathy theory is accurate, then there are many neurotypicals who are miserably failing to rise to the occasion. Perhaps that is why we still live in a world where the neurotypical approach to communication is deemed "correct," and neurodivergent approaches are quite simply "wrong." It is also why I've often suspected that sometimes, when an unqualified third party challenges an autistic person's diagnosis, they do so to make sure neurodivergent behaviors remain stigmatized and neurotypical behaviors remain privileged. By doing this, would it not allow them to claim that they aren't really discriminating since they are rendering the reality of their target's differences into something "debatable"?

When speaking with my friend Morénike Giwa-Onaiwu, an author and autism advocate, I shared my own hypothesis about neurotypical tendencies to reject autism when it is explained to them. Is it possible that this is done deliberately (whether consciously or subconsciously) to blame the autistic person for their own autistic traits and thereby justify excluding and mistreating them?

If the double empathy theory is accurate, then there are many neurotypicals who are miserably failing to rise to the occasion. Perhaps that is why we still live in a world where the neurotypical approach to communication is deemed "correct," and neurodivergent approaches are quite simply "wrong." It is also why I've often suspected that sometimes, when an unqualified third party challenges an autistic person's diagnosis, they do so to make sure neurodivergent behaviors remain stigmatized and neurotypical behaviors remain privileged. By doing this, would it not allow them to claim that they aren't really discriminating since they are rendering the reality of their target's differences into something "debatable"?

When speaking with my friend Morénike Giwa-Onaiwu, an author and autism advocate, I shared my own hypothesis about neurotypical tendencies to reject autism when it is explained to them. Is it possible that this is done deliberately (whether consciously or subconsciously) to blame the autistic person for their own autistic traits and thereby justify excluding and mistreating them?

Although I think both the former (double empathy) and the latter apply, I am pretty certain that in some instances it's partly — heck, I'd even say largely — gatekeeping (whether deliberate or subconscious)," Giwa-Onaiwu told Salon.

Autistic political journalist Eric Garcia, who wrote the book "We're Not Broken: Changing the Autism Conversation," offered a complementary take on how gatekeeping occurs. During our brief conversation, we discussed how even people who dismiss or minimize autistic experiences frequently do so because they already are biased against the target for their autism. For many neurotypicals if someone says they are autistic, that means they are not credible in the first place, even when discussing their own condition.

Perhaps the underlying issue is that, among neurotypicals, there is a distinct pattern of either not understanding — and, when given the chance, of not wanting to understand — how autism-related traits affect the way we communicate. There is an unyielding, hostile and at times aggressive belief among many neurotypicals that they have a right to decide what is and is not related to autism: the autistic person's diagnosis be damned.

If the issue was merely one of ignorance, then a clear and reasonable explanation would be enough to change things. When that does not work, it is reasonable to suspect that the rejection is born from more than mere pride.

Oh boy, where to start?

I am a firm believer in the double empathy theory. It is naive to think some of what was described is not intentional bullying. I just don’t think most NT’s go around thinking how can I put those spoiled brats in their place.

The overlying reason is that if you are in the vast majority you don’t experience nor need to understand the needs of a small minority. Added complications are
1. Autism is a complicated difficult condition to grasp.

2. Understanding of Autism is new and evolving.

3. First impressions are big deal and the first impressions for many are A. The autistic kid they know. B. The older understandings of Autism. C. Media Portrayals. Changing those first impressions is not natural. Difficulty with change is something we out of all people should understand.

4. People mostly think about what is going on with them and immediately around them, thus the information they receive about Autism is going to be very limited and they don’t have time to deliberately ablesplain.


_________________
Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity

“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman


Mona Pereth
Veteran
Veteran

Joined: 11 Sep 2018
Gender: Female
Posts: 7,810
Location: New York City (Queens)

02 Mar 2023, 2:50 pm

ASPartOfMe wrote:
I just don’t think most NT’s go around thinking how can I put those spoiled brats in their place.

I don't think most NT's do either. But there are indeed plenty of (mostly right-wing-leaning) people who have precisely the above attitude (a.k.a. "owning the libs") toward marginalized people of all kinds, not just autistic people.


_________________
- Autistic in NYC - Resources and new ideas for the autistic adult community in the New York City metro area.
- Autistic peer-led groups (via text-based chat, currently) led or facilitated by members of the Autistic Peer Leadership Group.
- My Twitter / "X" (new as of 2021)


funeralxempire
Veteran
Veteran

User avatar

Joined: 27 Oct 2014
Age: 39
Gender: Non-binary
Posts: 25,184
Location: Right over your left shoulder

02 Mar 2023, 3:32 pm

Mona Pereth wrote:
ASPartOfMe wrote:
I just don’t think most NT’s go around thinking how can I put those spoiled brats in their place.

I don't think most NT's do either. But there are indeed plenty of (mostly right-wing-leaning) people who have precisely the above attitude (a.k.a. "owning the libs") toward marginalized people of all kinds, not just autistic people.


A lot of people seem to think that freedom of speech is the same as everyone needing to hear their hot takes on everything.

For some reason this overlaps with being deeply uninformed on whatever issue the take is being offered on, like for example what autism is/how it impacts one's experience, etc. Some people feel entitled to tell it like it is, while unfortunately having no understanding of how it is.


_________________
"If you stick a knife in my back 9 inches and pull it out 6 inches, there's no progress. If you pull it all the way out, that's not progress. The progress is healing the wound that the blow made... and they won't even admit the knife is there." Malcolm X
戦争ではなく戦争と戦う


Mona Pereth
Veteran
Veteran

Joined: 11 Sep 2018
Gender: Female
Posts: 7,810
Location: New York City (Queens)

03 Mar 2023, 1:51 am

funeralxempire wrote:
A lot of people seem to think that freedom of speech is the same as everyone needing to hear their hot takes on everything.

For some reason this overlaps with being deeply uninformed on whatever issue the take is being offered on, like for example what autism is/how it impacts one's experience, etc. Some people feel entitled to tell it like it is, while unfortunately having no understanding of how it is.

Yep. Probably related to the Dunning–Kruger effect, combined with relative privilege.


_________________
- Autistic in NYC - Resources and new ideas for the autistic adult community in the New York City metro area.
- Autistic peer-led groups (via text-based chat, currently) led or facilitated by members of the Autistic Peer Leadership Group.
- My Twitter / "X" (new as of 2021)


carlos55
Veteran
Veteran

Joined: 5 Mar 2018
Gender: Male
Posts: 1,779

03 Mar 2023, 7:41 am

The main problem is there is no single autism, the word is just a 1940’s umbrella name to describe neurological deficits of various kinds.

Until science moves on in its understanding uninterested people will just revert to either their own autistic experience or their NT experience of what an autistic person looks like based on someone they know or seen


_________________
"The reasonable man adapts himself to the world; the unreasonable one persists in trying to adapt the world to himself. Therefore all progress depends upon the unreasonable man."

- George Bernie Shaw


Caz72
Veteran
Veteran

User avatar

Joined: 20 Feb 2013
Age: 51
Gender: Female
Posts: 1,394
Location: England

03 Mar 2023, 6:43 pm

my autism often gets disbelieved because apparently i dont look autistic because im too beautiful.. stupid to say that tho because autism is not a disorder that makes one unattractive but it seems like they just think that autistic people are unattractive for some weird reason

i mean people who know me see me driving around in my car with sunglasses on and rap music playing and my golden hair all styled and wearing fashionable clothes and get surprised and say are you sure shes autistic?? to my son or partner

they also dont believe im autistic because i can drive a bus :roll:


_________________
Have diagnosis of autism.
Have a neurotypical son.


Edna3362
Veteran
Veteran

User avatar

Joined: 29 Oct 2011
Gender: Female
Posts: 11,366
Location: ᜆᜄᜎᜓᜄ᜔

03 Mar 2023, 7:29 pm

People with half a knowledge is more dangerous than ignorant people.
They themselves presumed competence towards themselves when they are ignorant at the fact that they don't have said competence.

This is what it is in my case -- people around overall me are so ignorant, that's what saves me from strangers explaining autism.

Unless they're, like, professionals with years of experiences around autistics, people would figure they're out of their depth attempting to know my own case.


The rest? Human impatience and fear, not bothering to understand and let alone get it.
While that's frustrating itself, I accept the fact that people overall are not patient and understanding -- that I have to understand the fact why and I do understand.

Even as a child, who then do not have the words for these things, do understand.
That's why I chose to be, while a bit quirky with particular issues, I also have to be a bit intimidating towards my peers just to be taken seriously.
Invisible disability and not passing be damned, I was still a child and found a way to afford the fact that I'm an equal and I'm also someone different.

Now as an adult?
I could care less. I'd play around other people's presumptions than turn try and convince their assumptions around. It shows more of who these people are than who I'm.


_________________
Gained Number Post Count (1).
Lose Time (n).

Lose more time here - Updates at least once a week.


MatchboxVagabond
Veteran
Veteran

Joined: 26 Mar 2023
Age: 43
Gender: Male
Posts: 1,182

29 Mar 2023, 10:12 am

carlos55 wrote:
The main problem is there is no single autism, the word is just a 1940’s umbrella name to describe neurological deficits of various kinds.

Until science moves on in its understanding uninterested people will just revert to either their own autistic experience or their NT experience of what an autistic person looks like based on someone they know or seen


Yes, the groupers versus the splitters. It's probably never going to be possible to define any of this in a way where pretty much everybody is covered with a specific label. I hope we don't get to the point like some folks have with gender where there's so many of them that people can't really keep up, but nearly all of them have an incidence rate of a fraction of a percent. (No judgment, but it does make advocacy a challenge when you first have to explain what any of those less familiar words mean) I do think that the trend towards grouping this stuff together is probably more helpful because it does reduce the incidence of technically not autistic, but still quirky AF, but still ND.

It legit did not occur to me what the results meant when I was evaluated. Being on the borderline or not in the region at all is not the same thing as being NT, it just means that you didn't meet the evaluations criteria as estimated by the person doing the evaluation. It does not mean that you're not severely impacted by various aspects of the condition, you just didn't collect enough Pokemon to unlock the title. There may not have been enough to begin with, or a bunch of this stuff that you thought were normal, were only normal in the ASD space.



albertsamuel
Emu Egg
Emu Egg

Joined: 31 May 2023
Age: 40
Gender: Male
Posts: 7

31 May 2023, 5:21 pm

Thank you for starting this thread, it has been on my mind lately.

I think another part of the issue is that in general people are not good at acknowledging conditions that are not visible right away. It is the same with depression - many times on the news there was this famous, successful person who committed suicide and the friends/coworkers were like "I am so shocked, he seemed so happy blah blah blah". Paradoxically, the better you are at coping with your problems, the more likely you are to hear stuff like "You only have a very mild form", because they only judge the condition by the things you fail at. Hell, the ASD diagnostic criteria are still based on a checklist of stuff you are bad at.

Funny thought: There are people finishing a marathon despite having lost a leg in an accident. But if legs were not visible, can you imagine the things they would hear? "You just run a marathon, you cannot have lost a leg", "Loosing the leg is all in your head", "It took you almost 5 hours to finish the race, if you tried a little bit harder and stopped making excuses you could make it in 4".



ASPartOfMe
Veteran
Veteran

User avatar

Joined: 25 Aug 2013
Age: 66
Gender: Male
Posts: 34,249
Location: Long Island, New York

01 Jun 2023, 3:12 am

albertsamuel wrote:
Thank you for starting this thread, it has been on my mind lately.

I think another part of the issue is that in general people are not good at acknowledging conditions that are not visible right away. It is the same with depression - many times on the news there was this famous, successful person who committed suicide and the friends/coworkers were like "I am so shocked, he seemed so happy blah blah blah". Paradoxically, the better you are at coping with your problems, the more likely you are to hear stuff like "You only have a very mild form", because they only judge the condition by the things you fail at. Hell, the ASD diagnostic criteria are still based on a checklist of stuff you are bad at.

Funny thought: There are people finishing a marathon despite having lost a leg in an accident. But if legs were not visible, can you imagine the things they would hear? "You just run a marathon, you cannot have lost a leg", "Loosing the leg is all in your head", "It took you almost 5 hours to finish the race, if you tried a little bit harder and stopped making excuses you could make it in 4".

1. Welcome to Wrong Planet

2. You are welcome

3. You are absolutely correct about Invisible Conditions.


_________________
Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity

“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman