What is autism? How the term became too broad to have meanin
I'd go further and say that situational functioning may be a better way to look at it. Some will be high in certain situations, and low in others.
I can't disagree with that. An important point .
A true story . A week into my first psychiatric admission I was told I was being sent to make doll's houses . I was not in a good state of mind, and knew I was very poor when it came to constructing anything . I had a bad reaction to such news. I was dragged from the path of a hospital bus . Instead of someone trying to look at why I had reacted so badly I was seen by a very disapproving pdoc who told me I was an awkward teenager .
There was sod all attempt to understand why I'd reacted as I did . It seems to me there are ignorant people who want to drag us back to those less enlightened times .
I think that is a shared aspect of autism, a common point across the spectrum.
I have no answers, just an understanding of how you feel because it is shared, and it hurts, always hurts like an open wound.
Sorry sister, I dull the pain by thinking it is somehow good to feel this way, this is the price we pay for feeling.
Thank you, all of you. It is a very shared Autistic tragedy that so many of us are made to feel this way. It makes it so difficult to feel like my life has any value when my needs are so rejected by society. And many of these needs directly affect my ability to actually survive and every day it is harder and harder. I do everything I can to advocate for our community, for all of us, not just HFAs, because I believe that we all have so much more in common than we have differences. But it is such a struggle just to be validated as worthy of any kind of consideration or help when we look so normal even though we struggle so intensely.
I understand that God sees me as His treasure, just like He sees all of us. And even for those who do not share my beliefs in God, it is no different, we are all treasured just because we exist. We each have such a special role in life. We were all born to be of great value in our own unique ways. But even knowing this, the way that we are often treated is so dehumanizing as if we were completely worthless in society . I am not saying that every single person treats us this way but enough people do that it has a huge impact and makes life and simple existence a huge and difficult burden. No one should have to feel that way but the way that society treats people who are different can be beyond cruel.
Advocating is so hard because every time you try and all the efforts you make, you are met with such opposition when you are just trying to change the simplest things. Some of those things seem so ridiculous. It is a shame that things like blasting stereos or choices of music in public places can be more important than people's lives. And change is so slow. It took me two and a half years of fighting to finally get my local hospital to order weighted blankets. It hurts so much that we have to fight so hard for such insignificant things. Those things are so important to our well being and survival but they are so trivial that people should be able to do them without any effort. We have to make so much effort to be given accommodations that take no effort on the parts of others, only consideration and caring. That hurts so much. It hurts that it takes years of begging and fighting just to get people to do things that they should be able to do so easily if they just cared about others.
I am glad that I am not alone in how I feel but I am heartbroken and devastated that we have to feel this way at all.
_________________
"I'm bad and that's good. I'll never be good and that's not bad. There's no one I'd rather be than me."
Wreck It Ralph
I think that is a shared aspect of autism, a common point across the spectrum.
I have no answers, just an understanding of how you feel because it is shared, and it hurts, always hurts like an open wound.
Sorry sister, I dull the pain by thinking it is somehow good to feel this way, this is the price we pay for feeling.

_________________
"I'm bad and that's good. I'll never be good and that's not bad. There's no one I'd rather be than me."
Wreck It Ralph
I think that is a shared aspect of autism, a common point across the spectrum.
I have no answers, just an understanding of how you feel because it is shared, and it hurts, always hurts like an open wound.
Sorry sister, I dull the pain by thinking it is somehow good to feel this way, this is the price we pay for feeling.

I wish I had the answers as much as you do.
We just have to allow each other to, I want to say vent but it does not encompass enough, express and llet it out without the fear of people giving us s**t for exploding, I know it sounds a tad corny or is it croney, unsure, but having the platform to express is just everything and we really have nowhere else, if we do it in other places then it's ridicule that we will face every damn time.
Our voice here joins the others and together we make beautiful music.
AAAHHWOOOOO
I think that is a shared aspect of autism, a common point across the spectrum.
I have no answers, just an understanding of how you feel because it is shared, and it hurts, always hurts like an open wound.
Sorry sister, I dull the pain by thinking it is somehow good to feel this way, this is the price we pay for feeling.

I wish I had the answers as much as you do.
We just have to allow each other to, I want to say vent but it does not encompass enough, express and llet it out without the fear of people giving us s**t for exploding, I know it sounds a tad corny or is it croney, unsure, but having the platform to express is just everything and we really have nowhere else, if we do it in other places then it's ridicule that we will face every damn time.
Our voice here joins the others and together we make beautiful music.
AAAHHWOOOOO
_________________
"I'm bad and that's good. I'll never be good and that's not bad. There's no one I'd rather be than me."
Wreck It Ralph
Do your needs involve any deep mysteries that need to be researched, or do they just need to be accommodated, by already-existing means, in ways that should be obvious to any reasonably intelligent person who was aware of your needs and cared?
If not the former but only the latter, then you don't need your needs to be a high research priority. You just need a better-organized autistic community to help you call attention to your needs and get them accommodated.
You will always be ignored ... until we have a much better-organized autistic community and hence also a much bigger and better organized neurodiversity / autistic rights movement.
_________________
- 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.
That would be a seriously retrograde step.
Indeed, any drastic shrinkage of the definition of "autism"/"ASD" would be a seriously retrograde step for that very reason.
_________________
- 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.
Do your needs involve any deep mysteries that need to be researched, or do they just need to be accommodated, by already-existing means, in ways that should be obvious to any reasonably intelligent person who was aware of your needs and cared?
If not the former but only the latter, then you don't need your needs to be a high research priority. You just need a better-organized autistic community to help you call attention to your needs and get them accommodated.
You will always be ignored ... until we have a much better-organized autistic community and hence also a much bigger and better organized neurodiversity / autistic rights movement.
Yes
To the autistic peoples
I'm very sorry if any of my posts earlier in this thread contributed in any way to making you feel that way.
I feel that autism research should focus primarily on the needs of those who are unable to communicate. But the rest of us still need services, supports, and accommodations, many of which are fairly simple and straightforward, not requiring a whole lot of research.
(See also my posts at the bottom of the previous page of this thread.)
_________________
- 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.
Last edited by Mona Pereth on 28 Aug 2019, 11:30 pm, edited 1 time in total.
I'm very sorry if any of my posts earlier in this thread contributed in any way to making you feel that way.
I feel that autism research should focus primarily on the needs of those who are unable to communicate. But the rest of us still need services, supports, and accommodations, many of which are fairly simple and straightforward, not requiring a whole lot of research.
KK lives in queens, do you guys know each other?
No we don't, as far as I know.
I'm happy to receive occasional PM's from anyone living in the NYC area.
_________________
- 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.
Similar Topics | |
---|---|
The term neurospicy |
13 May 2025, 4:42 pm |
What is the term for mental energy and its unit? |
27 May 2025, 12:43 pm |
Having Autism |
26 Apr 2025, 6:00 am |
Did your Autism get better with age? |
06 Jun 2025, 2:11 pm |