different opinions on autism from autistic people

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ASPartOfMe
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19 Dec 2023, 7:51 am

colliegrace wrote:
Such as if it is a disorder or disability, or personal feelings on a "cure".

I recently ordered this book off Amazon: I Am Autistic: A Workbook: Sensory Tools, Practical Advice, and Interactive Journaling for Understanding Life with Autism (By Someone Diagnosed With it)

I read the whole thing already, and it offered great insights. I even made some discoveries that I hadn't made before in all my research.
Then there's the chapters near the end that talk about the things in my first sentence.

I don't entirely disagree with the author's views on those things, which include the social model of disability, and that autism is a neurotype. I just think that "autism is only a neurotype" is a very level 1 thing to say, if that makes sense. People who are deeper into the spectrum may feel a little differently.
I like being autistic and I embrace my differences. I wouldn't want to be neurotypical at all. But I also am not severely disabled by my autism - I do consider my autism a disability, and not entirely based on the social model!

What are your thoughts?


I think of my autism in a similar way.

Fenn wrote:
When I was growing up the saying was “I’m ok, you’re ok”.
The new fashion is “I’m ok, and it is about time you shaped up”.

So true. And I do remember that saying.


Really good thread.


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carlos55
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19 Dec 2023, 2:30 pm

There’s a lot of stuff online written by autistic people much of it Pseudoscience or simply invented by them because it fits in with how they want the universe to be rather than how it actually is.

A lot of other stuff is simply denied or ignored because it doesn’t fit with their narrative

All I can say is autism is known to distort how one perceives the world like schizophrenia but in a different way

So I found out the hard way thoughts and feelings may not necessarily be reliable anymore than acting out of emotion is the best course of action.

The world is a mean place, everything given is generally out of love from parents or charity from government if your lucky to live in a rich country.

Only science to boost people’s cognitive ability to bring the disadvantaged up to a level playing field is the real salvation for those with brain impairments

I sure don’t think anyone outside our circle of love is giving anything up for us.


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19 Dec 2023, 3:03 pm

Fenn wrote:
[

I am diagnosed ADHD and Autistic.

I know. You refered to taking your ADHD-meds and still being yourself. My point is that I think autism is more of a variation and not to the same degree as ADHD a deficit with symptoms that you can eliminate with meds while still being yourself.


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TheOutsider
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19 Dec 2023, 3:57 pm

As far as I'm concerned, autism is a horrible disorder. If I could go back in time and completely eliminate it from my life I would do so without hesitation.



Mid Life Aspie
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23 Dec 2023, 6:39 pm

I think it's just a label that it has become fashionable to put on people, especially on anyone shy/regularly low in confidence or with an interest in a hobby/subject typically seen as "not cool".

For 30 years I had pretty much the same personality/mix of strengths and weaknesses, and there'd been no mention of autism from anyone, even the neurologists I was seeing about epilepsy. Then suddenly it starts being mentioned by random people.

Summed up perfectly by how when I went to a local doctor (who I hadn't seen before) about gout. She asks "Have you heard of Aspergers?" and quickly afterwards she says "Oh it's nothing to worry about, it's just a characteristic like blond hair".

I agree - if there even is such a condition/set of traits, then it's just a characteristic.
And if she's now saying it's just like blond hair and nothing to worry about, then why point it out to me? Answer: Because it has become fashionable to.
Even if it was something to worry about, with it being incurable then why point it out to me when I'm happy with how life is now? Answer: Because it's fashionable to.


Out of the responses there's been on this thread, my favourites are:

Double Retired wrote:
Autism is a fundamental part of my essence and a "cured" me would no longer be me


v4169sgr wrote:
For me, there's no 'normal' - there is only 'different'....'Curing' autism would be a bit like opening the hatch, taking them 'me' put, and replacing it with another, quite different 'me'.



colliegrace
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23 Dec 2023, 7:48 pm

So true bestie, it's so fashionable to have public meltdowns at work because I can hear the bags at work crinkling too much. I love it when I get overwhelmed by too much activity and want to stab the customers wit a rusty fork because oh my god can you people leave me the f**k alone for 5 seconds?!
Severe burnout from sensory overload caused by my job having a remodel? To the point I am extremely exhausted all the time, at work or at home, and need to constantly sleep or lie down and do nothing? Tres bien!
I love how I get extremely overwhelmed being inside a Walmart. It's my favorite. Or how I was extremely sick and probably looked to others like I was on drugs while on a subway ride because of my sensory issues going berserk.

There are many traits of my diagnosis that are absolutely harmless or at least not a big deal, like the way I will vocal stim at work (my favorite is saying "beep" right now, and my coworker said I was going to drive her up the wall if I said beep one more time), but this disorder is diagnosed based if it is causing you actual problems.

I had social anxiety for many years because of my lack of social skills and inability to read people.


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Twiglet
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24 Dec 2023, 5:54 am

I'd like to not have to feel so scared of people talking to me all the time. It really dominates my life.
I'd like either a cure that made talking to people not a big deal, or I'd like to live in a world where there's no expectation for me to talk back, or where I can say what I want to say instead of have to say what is expected, and not have people feel offended.



colliegrace
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24 Dec 2023, 5:27 pm

Twiglet wrote:
I'd like to not have to feel so scared of people talking to me all the time. It really dominates my life.
I'd like either a cure that made talking to people not a big deal, or I'd like to live in a world where there's no expectation for me to talk back, or where I can say what I want to say instead of have to say what is expected, and not have people feel offended.

I used to qualify as having mild to moderate social anxiety because of my inability to read people, for sure. Working customer service and learning how to talk to people that way appears to have remedied that. I still can't read people, but I have worked out ways around my shortcomings.


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25 Dec 2023, 12:52 pm

On a bad day, I would say that Autism is what you have when you acknowledge that your brain doesn't function according to certain norms, but at the same time, you don't have a clearly identifiable condition such as schizophrenia.

One symptom is lack of empathy, which doesn't mean what people often think it means. It doesn't mean being oblivious to another person's suffering, for example. Rather it's the inability to share feelings with others at a subverbal level. This ability is a survival tactic for humans as a group. A primitive human wasn't born with physical weapons for defending himself against predators, but a group of humans could use empathy to outmaneuver the lion or bear threatening them. Canids do have empathy, and although they and humans have been at odds throughout history, some of them have also bonded with humans. But I digress.

Another manifestation is sensory processing issues. We all know the stereotype of the autistic wearing noise-cancelling headphones in public, but the fact is that many people diagnosed with autism don't benefit from those. My son, who has been diagnosed as autistic since age 3 and is seriously handicapped by it (and OCD) has never had "sensory issues" nor face blindness, for that matter.

So people who are labelled "autistic" don't share the same experience of autism, which makes this a difficult question to answer.

I found Midlife Aspie's comments to be interesting. You could potentially have autism, some form of it anyway, and never know that you might have a diagnosable condition. Unless it was obviously limiting your life to the point of being unable to provide for yourself, etc. If so, you might just muddle through, and you'd probably just blame yourself for not trying hard enough. In my case, I never got formally diagnosed, but understanding of autism has helped me find ways to compensate (especially in the professional world) and helped me to understand my true wants and needs. That there's a good reason I'm no fun for most people to be around. To appreciate the things I have and my ability to feel fulfilled by them.


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colliegrace
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25 Dec 2023, 6:53 pm

I understand where it comes from, I just ultimately cannot agree. It's true that I could probably have gone the rest of my life not knowing I was autistic - a lot of elderly people are autistic and never knew it and will die not knowing it.

But learning about it has definitely benefited me, since I now know where most of my problems come from and how better to deal with them. For instance - I thought I had (and was dx'd with) generalized anxiety, but turns out it was actually sensory processing issues that cause anxiety-like symptoms. Which explains a lot of things, including why anxiety meds don't work for me.
Now that I know, I can deal with it properly and far more successfully.

In the same way someone who doesn't know major depressive order is a thing while suffering from it: it doesn't make MDD not a disorder. It just means they don't know they have a disorder, even while it is causing them difficulties.

IMO autism is only fashionable in the realm of the internet, where you could theoretically say you're autistic, enjoy believing you are autistic, feel special about it, etc..... but out in society, all the benefits of that are virtually non-existent. The news will use people w mental disorders, including autism, as the boogyman. Literally just days ago an article was released on the murderers of the trans teenager who was killed earlier in the year, and the article just had to make sure to mention that the killers had autism and ADHD. :roll:


I have heard of a theoretical "level 0": where level 1 is "some support needed", level 0 would be "has autistic traits but no difficulties caused by them." I don't know that I'd agree that such a level actually exists though, in the sense that "level 0" would be an autistic person rather than someone with BAP. Idk, debatable ig.


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26 Dec 2023, 6:50 am

To me, support means something a person needs that isn't ordinarily needed, for some aspect of life. Like they can't work in an office unless the fluorescent tubes are replaced by LEDs. Or they can't live independently unless an aide occasionally comes by to help with executive function issues. I think a lot of Level 1 autistics can manage without these things. In fact most people who were diagnosed with Asperger's Syndrome don't need them. But if somebody has issues with sensory overload, then they probably need something even if just noise canceling headphones or to bring a support animal with them when they travel by air. But if somebody is Level Zero, then I wouldn't think them fully autistic. A lot of people who have received AS diagnoses in the past might not be considered autistic on that basis.


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colliegrace
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26 Dec 2023, 8:30 am

Support can be self-provided, such as stuff to manage sensory issues or needing to work harder to learn to handle social situations.
I do think I need to either live with someone to help w executive dysfunction, or have a case worker to come by and hold me accountable. Right now I live with family. I'm level 1. My Dr didn't include the official level in my paper diagnosis cuz she just doesn't, but I did ask her about the level.

I have learned to deal w most social situations, but I ultimately learned to do so by being overly agreeable and polite. So I've very much learned to be a people pleaser because I'm socially blind. I'm in the process of unlearning the people pleasing.

I suppose there are people who need even less support than me, but I also almost consider myself to be about as mild as it gets.
You maybe could make the argument that my ASD is not a disability in my case (I consider myself to have a disability), I just feel like dismissing autism as fun and games is kinda an injustice to the greater majority of diagnosed ASDers who struggle immensely.


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RAADs: 104 | ASQ: 30 | Aspie Quiz: 116/200 (84% probability of being atypical)

Also diagnosed with: seasonal depression, anxiety, OCD


Fenn
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03 Jan 2024, 8:02 am

Mid Life Aspie wrote:
Summed up perfectly by how when I went to a local doctor (who I hadn't seen before) about gout. She asks "Have you heard of Aspergers?" and quickly afterwards she says "Oh it's nothing to worry about, it's just a characteristic like blond hair".


Frankly your doctor is misinformed and would benefit by reading up on the most recent eeg studies and neuro-imaging meta-statistical studies.


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JamesW
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03 Jan 2024, 8:31 am

Mid Life Aspie wrote:
I think it's just a label that it has become fashionable to put on people, especially on anyone shy/regularly low in confidence or with an interest in a hobby/subject typically seen as "not cool".


Only in the same way that, when I was a little boy, it was fashionable for little boys to call anybody who was different in any way a 'spastic', whether they had cerebral palsy or not.

I am actually autistic.

Quote:
For 30 years I had pretty much the same personality/mix of strengths and weaknesses, and there'd been no mention of autism from anyone, even the neurologists I was seeing about epilepsy. Then suddenly it starts being mentioned by random people.


There was no awareness of adult autism for years. People just didn't know what it was. A lot of people still don't...

Quote:
Summed up perfectly by how when I went to a local doctor (who I hadn't seen before) about gout. She asks "Have you heard of Aspergers?" and quickly afterwards she says "Oh it's nothing to worry about, it's just a characteristic like blond hair".


... including some doctors.


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v4169sgr
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03 Jan 2024, 10:09 am

JamesW wrote:
Only in the same way that, when I was a little boy, it was fashionable for little boys to call anybody who was different in any way a 'spastic', whether they had cerebral palsy or not.

I am actually autistic.


I can definitely identify with this experience. Imagine being singled out for this in particular in a school of 2400 pupils ...



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03 Jan 2024, 12:18 pm

v4169sgr wrote:
JamesW wrote:
Only in the same way that, when I was a little boy, it was fashionable for little boys to call anybody who was different in any way a 'spastic', whether they had cerebral palsy or not.

I am actually autistic.


I can definitely identify with this experience. Imagine being singled out for this in particular in a school of 2400 pupils ...

I got called a "Spazz" (short for spastic) throughout childhood. Odd that this particular epithet was used in both the UK and US.


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