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Pieplup
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15 Jan 2023, 8:05 pm

We at HNAA aim to give voice and assist higher needs autistic people in advocating themselves. We are tired of people speaking over us. Our goal is to promote awareness of Level 2s/3s and their experiences and desires. And help put an end to the excessive amount of ableism and abuse we experience as Level 2/3s. But this movement isn't just about Level 2s/3s it also wants to stop people from trying to say autism isn't a disability or opting it as some new fangled identity. We want to promote the understanding and support of all autistics, so they can live better happier lives. The best way we can think of to do that is to give voices to those who struggle to communicate. the basic idea is to have a central structure of higher needs autistic people then have an outer structure of allies who help advocate for us. But just because you aren't level 2/3 doesn't mean you are excluded from discussion either. Our goal is to give those who struggle to be heard a platform to speak. To raise awareness and combat misinformation. To spread awareness of what life is really like as a higher needs autistic individual. Right now we are small but the hope is we can grow into a large organization that helps higher needs autistic people be heard around the globe. But as high needs autistic people we are very limited, Which is where the allies come in. It's your job to help advocate for our ideas and help get them out there. This does not mean speaking for us But amplifying our voices. and Helping us advocate for ourselves when we don't have the energy too. The goal is to ultimately bring people together everyone affected by autism by raising those who are less able up to a place where they can meet people on even ground. To promote unity. Our vision is to have a place where all people affected by autism whether you are a Level 2/3 a Level 1 a caregiver a professional can exist in harmony without division.

our reddit
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I am pieplup i have level 3 autism and a number of severe mental illnesses. I am rarely active on here anymore.
I run a discord for moderate-severely autistic people if anyone would like to join. You can also contact me on discord @Pieplup or by email at [email protected]


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15 Jan 2023, 8:21 pm

Am Sorry never heard of HNAA...... Not having a grasp on what is really is a what joining might entail .
Cannot give this the attention you may wish ?


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Pieplup
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15 Jan 2023, 8:46 pm

Jakki wrote:
Am Sorry never heard of HNAA...... Not having a grasp on what is really is a what joining might entail .
Cannot give this the attention you may wish ?
It's an organization i'm trying to start to help higher needs autistics advocate for themselves. I want to inspire lasting change, Just working through wrongplanet woujdl not allow that to happen.


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ever changing evolving and growing
I am pieplup i have level 3 autism and a number of severe mental illnesses. I am rarely active on here anymore.
I run a discord for moderate-severely autistic people if anyone would like to join. You can also contact me on discord @Pieplup or by email at [email protected]


ASPartOfMe
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15 Jan 2023, 11:13 pm

While I disagree that Autism can not be both a significant disability and a identity I wish you good luck. While most media attention of late is focused on level 1s most of the research is still directed at level 3’s. IMHO that combined with until recently level 3’s had nearly all of the attention so it seems like the rug is being pulled out from them. Level 2’s are overlooked. It goes back to when they coined high functioning and low functioning and not medium functioning.


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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


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16 Jan 2023, 5:42 pm

ASPartOfMe wrote:
While I disagree that Autism can not be both a significant disability and a identity I wish you good luck. While most media attention of late is focused on level 1s most of the research is still directed at level 3’s. IMHO that combined with until recently level 3’s had nearly all of the attention so it seems like the rug is being pulled out from them. Level 2’s are overlooked. It goes back to when they coined high functioning and low functioning and not medium functioning.

We aren't saying it can't be an idenitty autism can be an important part of your identity but autism isnt' an identity. It's not like some gender identity you can decide you identify as, yet people are starting to push towards it being that way. and we want to stop that. It's a serious neurodevelopemntal disorder that serious impacts even the least severe of those on the spectrums lives. Secondly, From what I understand that's not true most of the research ona utsim now adays focuses on low support needs individuals. and even has policies that are outright ableist and prevent people from talking about the serious struggles high needs autsitic people face. Few level 3 people have ever had a voice, to speak out and tell their experiences. a littel bit more level 2 people have but it's still very difficult for them and consumes alot of their energy. our goal is to serve as a microphone and give voices to those who srtuggle to communicate by using their perspectives, to write infomrative articles and educatepeople on what life is like as a high needs autistic individual. Furthermore, our founder (me) is a level 2 and so is our writer. and the other staff member is a level 1. Level 2s are going to play a large role in this both in terms fo management and in temrs fo the message we send. It's very important to us for level 2s/3s have a place where they can speak without others takling for them and tryingt o introduce policies that harm them. We want to stop the extreme amount of abuse (it's literally more common to have ptsd from things that are a direct result of being a high support needs autistic person than it isn't). By spreading awareness and giving those a voice. We also want to correct the harmful misinfomration spreading around autsimt hese days. In general, Level 2s have been completely ignored and are often subjected to extreme amounts of stress and trauma. It's common for level 2s to be forced under immense pressure trying to cope with significant developmental delays and ot develop cptsd and for burnout to permanetly damage their mind and ability to function. I hope to change this type of pain and suffering isn't the norm for my people. I also hate how when we try to speak up about it we are spoken over, or ignored. Or even called ableist. The severity of the abuse and suffering level 2s/3s face is often downplayed while what level 1s face is often up played. Fact of the matter is, Most of the issues level 1s face, burnout mental health issues, being assumed to be high functioning. Disporportionately affect those level 2s like me developed a bit too much to not be picked up as obviously disabled then where subject to being forced to learn to overcome those delys to a much more severe extent. Alot of the common struggles that are often associated with Level 1 autism often also commonly affect Level 2s/3s and are mostly ignored. Burnout is a huge issue with Level 2 people. For some of us it makes it impossible for us to do basic tasks for ourselves. Yet it is mostly ignored and associated as a level 1 thing. If you want to understadn more look into hte posts on the subreddit. Higher needs autistic people are consistently victims of ableism and abuse from all sides. Caregivers, lower needs autistic people, medical profesionals, teachers. At a much higher rate. An incredibly and disgustingly high rate in fact. They are often targeted because they struggle to communciate for themselves. There needs are often ignored or shoved under the rug as long as they don't cause problems. I'd argue level 3s never really had the attention in the first place. No one has ever done anything to help level 3s get their voices heard. The attention has always been on Level 3 autism as a disability or thier caregivers never the individuals themselves. That's what we want to change. The level of abuse and ableisma nd the reality of chronic stress and trauma we are often forced to face because we have no choice as high needs autistic people is ridiculous. And we here at HNAA want to change that. In hopes that by creating a network where High needs autsitic individuals can work together and collaborate to create articles to help educate people on what it's like to have more severe autism. And Potentially down the line, becoming a non-profit organization that's focused on helping higher needs people advocate for themselves. This is a very important cause, as Most of those who are high needs struggle to speak for themselves, the hope is by working together we can change that. We are constnatly told we aren't trying hard enough. If i can do it so can you. when many of us have cptsd from trying too hard and forcing our way past developmental delays. We are constantly forced to standards we simply can't abide by. We are often pushed out of autistic spaces by people who refuse to be considerate of our communication issues. I could go, on and on. But We aim to uplift high needs autistic people out of the opression they are in. In the hopes we can stop hte abuse and stop people who are completely competent, yet struggle to communciate from having their rights taken away. To stop the reality that, if you are a level 2 or 3, the reality is there's a 95% chance you will be abused.


_________________
ever changing evolving and growing
I am pieplup i have level 3 autism and a number of severe mental illnesses. I am rarely active on here anymore.
I run a discord for moderate-severely autistic people if anyone would like to join. You can also contact me on discord @Pieplup or by email at [email protected]


ASPartOfMe
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17 Jan 2023, 12:03 am

Pieplup wrote:
ASPartOfMe wrote:
While I disagree that Autism can not be both a significant disability and a identity I wish you good luck. While most media attention of late is focused on level 1s most of the research is still directed at level 3’s. IMHO that combined with until recently level 3’s had nearly all of the attention so it seems like the rug is being pulled out from them. Level 2’s are overlooked. It goes back to when they coined high functioning and low functioning and not medium functioning.

We aren't saying it can't be an idenitty autism can be an important part of your identity but autism isnt' an identity. It's not like some gender identity you can decide you identify as, yet people are starting to push towards it being that way. and we want to stop that. It's a serious neurodevelopemntal disorder that serious impacts even the least severe of those on the spectrums lives. Secondly, From what I understand that's not true most of the research ona utsim now adays focuses on low support needs individuals. and even has policies that are outright ableist and prevent people from talking about the serious struggles high needs autsitic people face. Few level 3 people have ever had a voice, to speak out and tell their experiences. a littel bit more level 2 people have but it's still very difficult for them and consumes alot of their energy. our goal is to serve as a microphone and give voices to those who srtuggle to communicate by using their perspectives, to write infomrative articles and educatepeople on what life is like as a high needs autistic individual. Furthermore, our founder (me) is a level 2 and so is our writer. and the other staff member is a level 1. Level 2s are going to play a large role in this both in terms fo management and in temrs fo the message we send. It's very important to us for level 2s/3s have a place where they can speak without others takling for them and tryingt o introduce policies that harm them. We want to stop the extreme amount of abuse (it's literally more common to have ptsd from things that are a direct result of being a high support needs autistic person than it isn't). By spreading awareness and giving those a voice. We also want to correct the harmful misinfomration spreading around autsimt hese days. In general, Level 2s have been completely ignored and are often subjected to extreme amounts of stress and trauma. It's common for level 2s to be forced under immense pressure trying to cope with significant developmental delays and ot develop cptsd and for burnout to permanetly damage their mind and ability to function. I hope to change this type of pain and suffering isn't the norm for my people. I also hate how when we try to speak up about it we are spoken over, or ignored. Or even called ableist. The severity of the abuse and suffering level 2s/3s face is often downplayed while what level 1s face is often up played. Fact of the matter is, Most of the issues level 1s face, burnout mental health issues, being assumed to be high functioning. Disporportionately affect those level 2s like me developed a bit too much to not be picked up as obviously disabled then where subject to being forced to learn to overcome those delys to a much more severe extent. Alot of the common struggles that are often associated with Level 1 autism often also commonly affect Level 2s/3s and are mostly ignored. Burnout is a huge issue with Level 2 people. For some of us it makes it impossible for us to do basic tasks for ourselves. Yet it is mostly ignored and associated as a level 1 thing. If you want to understadn more look into hte posts on the subreddit. Higher needs autistic people are consistently victims of ableism and abuse from all sides. Caregivers, lower needs autistic people, medical profesionals, teachers. At a much higher rate. An incredibly and disgustingly high rate in fact. They are often targeted because they struggle to communciate for themselves. There needs are often ignored or shoved under the rug as long as they don't cause problems. I'd argue level 3s never really had the attention in the first place. No one has ever done anything to help level 3s get their voices heard. The attention has always been on Level 3 autism as a disability or thier caregivers never the individuals themselves. That's what we want to change. The level of abuse and ableisma nd the reality of chronic stress and trauma we are often forced to face because we have no choice as high needs autistic people is ridiculous. And we here at HNAA want to change that. In hopes that by creating a network where High needs autsitic individuals can work together and collaborate to create articles to help educate people on what it's like to have more severe autism. And Potentially down the line, becoming a non-profit organization that's focused on helping higher needs people advocate for themselves. This is a very important cause, as Most of those who are high needs struggle to speak for themselves, the hope is by working together we can change that. We are constnatly told we aren't trying hard enough. If i can do it so can you. when many of us have cptsd from trying too hard and forcing our way past developmental delays. We are constantly forced to standards we simply can't abide by. We are often pushed out of autistic spaces by people who refuse to be considerate of our communication issues. I could go, on and on. But We aim to uplift high needs autistic people out of the opression they are in. In the hopes we can stop hte abuse and stop people who are completely competent, yet struggle to communciate from having their rights taken away. To stop the reality that, if you are a level 2 or 3, the reality is there's a 95% chance you will be abused.


What is and is and is not an identity is not a thing you can measure by science, it is an individual choice.

While the percentage of severe autism research has dropped a lot the number of studies of severe autism has gone up. That is because the number of Autism studies has exploded.

And as I said earlier I completely agree Level 2's are an ignored group. It would not surprise me if the vast majority of level 2's are misdiagnosed as level 1's or level 3's. Being a 65-year-old autistic I know what is like to be part of an ignored group.


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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


Pieplup
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17 Jan 2023, 3:03 am

ASPartOfMe wrote:
Pieplup wrote:
ASPartOfMe wrote:
While I disagree that Autism can not be both a significant disability and a identity I wish you good luck. While most media attention of late is focused on level 1s most of the research is still directed at level 3’s. IMHO that combined with until recently level 3’s had nearly all of the attention so it seems like the rug is being pulled out from them. Level 2’s are overlooked. It goes back to when they coined high functioning and low functioning and not medium functioning.

We aren't saying it can't be an idenitty autism can be an important part of your identity but autism isnt' an identity. It's not like some gender identity you can decide you identify as, yet people are starting to push towards it being that way. and we want to stop that. It's a serious neurodevelopemntal disorder that serious impacts even the least severe of those on the spectrums lives. Secondly, From what I understand that's not true most of the research ona utsim now adays focuses on low support needs individuals. and even has policies that are outright ableist and prevent people from talking about the serious struggles high needs autsitic people face. Few level 3 people have ever had a voice, to speak out and tell their experiences. a littel bit more level 2 people have but it's still very difficult for them and consumes alot of their energy. our goal is to serve as a microphone and give voices to those who srtuggle to communicate by using their perspectives, to write infomrative articles and educatepeople on what life is like as a high needs autistic individual. Furthermore, our founder (me) is a level 2 and so is our writer. and the other staff member is a level 1. Level 2s are going to play a large role in this both in terms fo management and in temrs fo the message we send. It's very important to us for level 2s/3s have a place where they can speak without others takling for them and tryingt o introduce policies that harm them. We want to stop the extreme amount of abuse (it's literally more common to have ptsd from things that are a direct result of being a high support needs autistic person than it isn't). By spreading awareness and giving those a voice. We also want to correct the harmful misinfomration spreading around autsimt hese days. In general, Level 2s have been completely ignored and are often subjected to extreme amounts of stress and trauma. It's common for level 2s to be forced under immense pressure trying to cope with significant developmental delays and ot develop cptsd and for burnout to permanetly damage their mind and ability to function. I hope to change this type of pain and suffering isn't the norm for my people. I also hate how when we try to speak up about it we are spoken over, or ignored. Or even called ableist. The severity of the abuse and suffering level 2s/3s face is often downplayed while what level 1s face is often up played. Fact of the matter is, Most of the issues level 1s face, burnout mental health issues, being assumed to be high functioning. Disporportionately affect those level 2s like me developed a bit too much to not be picked up as obviously disabled then where subject to being forced to learn to overcome those delys to a much more severe extent. Alot of the common struggles that are often associated with Level 1 autism often also commonly affect Level 2s/3s and are mostly ignored. Burnout is a huge issue with Level 2 people. For some of us it makes it impossible for us to do basic tasks for ourselves. Yet it is mostly ignored and associated as a level 1 thing. If you want to understadn more look into hte posts on the subreddit. Higher needs autistic people are consistently victims of ableism and abuse from all sides. Caregivers, lower needs autistic people, medical profesionals, teachers. At a much higher rate. An incredibly and disgustingly high rate in fact. They are often targeted because they struggle to communciate for themselves. There needs are often ignored or shoved under the rug as long as they don't cause problems. I'd argue level 3s never really had the attention in the first place. No one has ever done anything to help level 3s get their voices heard. The attention has always been on Level 3 autism as a disability or thier caregivers never the individuals themselves. That's what we want to change. The level of abuse and ableisma nd the reality of chronic stress and trauma we are often forced to face because we have no choice as high needs autistic people is ridiculous. And we here at HNAA want to change that. In hopes that by creating a network where High needs autsitic individuals can work together and collaborate to create articles to help educate people on what it's like to have more severe autism. And Potentially down the line, becoming a non-profit organization that's focused on helping higher needs people advocate for themselves. This is a very important cause, as Most of those who are high needs struggle to speak for themselves, the hope is by working together we can change that. We are constnatly told we aren't trying hard enough. If i can do it so can you. when many of us have cptsd from trying too hard and forcing our way past developmental delays. We are constantly forced to standards we simply can't abide by. We are often pushed out of autistic spaces by people who refuse to be considerate of our communication issues. I could go, on and on. But We aim to uplift high needs autistic people out of the opression they are in. In the hopes we can stop hte abuse and stop people who are completely competent, yet struggle to communciate from having their rights taken away. To stop the reality that, if you are a level 2 or 3, the reality is there's a 95% chance you will be abused.


What is and is and is not an identity is not a thing you can measure by science, it is an individual choice.

While the percentage of severe autism research has dropped a lot the number of studies of severe autism has gone up. That is because the number of Autism studies has exploded.

And as I said earlier I completely agree Level 2's are an ignored group. It would not surprise me if the vast majority of level 2's are misdiagnosed as level 1's or level 3's. Being a 65-year-old autistic I know what is like to be part of an ignored group.
it's morally wrong and questionable to identify and claim to be a neurodevelopmental disorder that is clinically diagnosed, and causes serious issues in life when you don't have that disorder andd on't qualify as it. Level 3 Autistic people almost never advocate for themselves.. I'm sure part of the reasno is a lack of a desire but also how difficult it would be to do so. Level 2s stuggel to advocate for htemselves and whent hey do people often twist their words and use them against them. And it is extremely costly fgor them to attempt to. We want to come together as a group and make it an easier channel to be heard.


_________________
ever changing evolving and growing
I am pieplup i have level 3 autism and a number of severe mental illnesses. I am rarely active on here anymore.
I run a discord for moderate-severely autistic people if anyone would like to join. You can also contact me on discord @Pieplup or by email at [email protected]


carlos55
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17 Jan 2023, 11:34 am

I very much support you and wish you luck. In fact most of what you say is what I've been saying for quite some time on WP.

Maybe you should try to connect to The National Council for Severe Autism( link) since combined forces will have a stronger impact

https://www.ncsautism.org/

They seem to be the dominant spokes group for more disabling autism attending meetings & liaising with various groups etc.. in the political space.

Maybe if you can get a petition among US autistics that share your view, that would be quite a powerful voice against the stuff that`s happening now. (Advise you to stick to US names, since you`ll find the relevant bodies not interested in non US people)

Maybe you could use social media like Twitter, facebook etc.. to put your voices out there

You`ll of course have to deal with the trolls (usually on twitter) who hate autism portrayed as anything other than a superpower that shouldn't be touched.

My advice here is to just ignore them. Don't waste your energy trying to challenge their delusions just stick to your objective which is to get our voice heard by the decision makers.

Good Luck :D


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17 Jan 2023, 1:32 pm

Pieplup wrote:
ASPartOfMe wrote:
Pieplup wrote:
ASPartOfMe wrote:
While I disagree that Autism can not be both a significant disability and a identity I wish you good luck. While most media attention of late is focused on level 1s most of the research is still directed at level 3’s. IMHO that combined with until recently level 3’s had nearly all of the attention so it seems like the rug is being pulled out from them. Level 2’s are overlooked. It goes back to when they coined high functioning and low functioning and not medium functioning.

We aren't saying it can't be an idenitty autism can be an important part of your identity but autism isnt' an identity. It's not like some gender identity you can decide you identify as, yet people are starting to push towards it being that way. and we want to stop that. It's a serious neurodevelopemntal disorder that serious impacts even the least severe of those on the spectrums lives. Secondly, From what I understand that's not true most of the research ona utsim now adays focuses on low support needs individuals. and even has policies that are outright ableist and prevent people from talking about the serious struggles high needs autsitic people face. Few level 3 people have ever had a voice, to speak out and tell their experiences. a littel bit more level 2 people have but it's still very difficult for them and consumes alot of their energy. our goal is to serve as a microphone and give voices to those who srtuggle to communicate by using their perspectives, to write infomrative articles and educatepeople on what life is like as a high needs autistic individual. Furthermore, our founder (me) is a level 2 and so is our writer. and the other staff member is a level 1. Level 2s are going to play a large role in this both in terms fo management and in temrs fo the message we send. It's very important to us for level 2s/3s have a place where they can speak without others takling for them and tryingt o introduce policies that harm them. We want to stop the extreme amount of abuse (it's literally more common to have ptsd from things that are a direct result of being a high support needs autistic person than it isn't). By spreading awareness and giving those a voice. We also want to correct the harmful misinfomration spreading around autsimt hese days. In general, Level 2s have been completely ignored and are often subjected to extreme amounts of stress and trauma. It's common for level 2s to be forced under immense pressure trying to cope with significant developmental delays and ot develop cptsd and for burnout to permanetly damage their mind and ability to function. I hope to change this type of pain and suffering isn't the norm for my people. I also hate how when we try to speak up about it we are spoken over, or ignored. Or even called ableist. The severity of the abuse and suffering level 2s/3s face is often downplayed while what level 1s face is often up played. Fact of the matter is, Most of the issues level 1s face, burnout mental health issues, being assumed to be high functioning. Disporportionately affect those level 2s like me developed a bit too much to not be picked up as obviously disabled then where subject to being forced to learn to overcome those delys to a much more severe extent. Alot of the common struggles that are often associated with Level 1 autism often also commonly affect Level 2s/3s and are mostly ignored. Burnout is a huge issue with Level 2 people. For some of us it makes it impossible for us to do basic tasks for ourselves. Yet it is mostly ignored and associated as a level 1 thing. If you want to understadn more look into hte posts on the subreddit. Higher needs autistic people are consistently victims of ableism and abuse from all sides. Caregivers, lower needs autistic people, medical profesionals, teachers. At a much higher rate. An incredibly and disgustingly high rate in fact. They are often targeted because they struggle to communciate for themselves. There needs are often ignored or shoved under the rug as long as they don't cause problems. I'd argue level 3s never really had the attention in the first place. No one has ever done anything to help level 3s get their voices heard. The attention has always been on Level 3 autism as a disability or thier caregivers never the individuals themselves. That's what we want to change. The level of abuse and ableisma nd the reality of chronic stress and trauma we are often forced to face because we have no choice as high needs autistic people is ridiculous. And we here at HNAA want to change that. In hopes that by creating a network where High needs autsitic individuals can work together and collaborate to create articles to help educate people on what it's like to have more severe autism. And Potentially down the line, becoming a non-profit organization that's focused on helping higher needs people advocate for themselves. This is a very important cause, as Most of those who are high needs struggle to speak for themselves, the hope is by working together we can change that. We are constnatly told we aren't trying hard enough. If i can do it so can you. when many of us have cptsd from trying too hard and forcing our way past developmental delays. We are constantly forced to standards we simply can't abide by. We are often pushed out of autistic spaces by people who refuse to be considerate of our communication issues. I could go, on and on. But We aim to uplift high needs autistic people out of the opression they are in. In the hopes we can stop hte abuse and stop people who are completely competent, yet struggle to communciate from having their rights taken away. To stop the reality that, if you are a level 2 or 3, the reality is there's a 95% chance you will be abused.


What is and is and is not an identity is not a thing you can measure by science, it is an individual choice.

While the percentage of severe autism research has dropped a lot the number of studies of severe autism has gone up. That is because the number of Autism studies has exploded.

And as I said earlier I completely agree Level 2's are an ignored group. It would not surprise me if the vast majority of level 2's are misdiagnosed as level 1's or level 3's. Being a 65-year-old autistic I know what is like to be part of an ignored group.
it's morally wrong and questionable to identify and claim to be a neurodevelopmental disorder that is clinically diagnosed, and causes serious issues in life when you don't have that disorder andd on't qualify as it. Level 3 Autistic people almost never advocate for themselves.. I'm sure part of the reasno is a lack of a desire but also how difficult it would be to do so. Level 2s stuggel to advocate for htemselves and whent hey do people often twist their words and use them against them. And it is extremely costly fgor them to attempt to. We want to come together as a group and make it an easier channel to be heard.

I agree that it is morally wrong to identify as something you are not be it autistic or black etc. There is nothing questionable about it, it is just bad. Autistics have enough stigmas we have to deal with. Those non-autistics identifying as autistic and faking autism just add more stigmas and stereotypes.

Unlike a lot of people these days I have no issue with appropriating things from other groups because you like them or you want to pay homage to them. If you do that you have to be careful.


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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


Pieplup
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17 Jan 2023, 9:13 pm

carlos55 wrote:
I very much support you and wish you luck. In fact most of what you say is what I've been saying for quite some time on WP.

Maybe you should try to connect to The National Council for Severe Autism( link) since combined forces will have a stronger impact

https://www.ncsautism.org/

They seem to be the dominant spokes group for more disabling autism attending meetings & liaising with various groups etc.. in the political space.

Maybe if you can get a petition among US autistics that share your view, that would be quite a powerful voice against the stuff that`s happening now. (Advise you to stick to US names, since you`ll find the relevant bodies not interested in non US people)

Maybe you could use social media like Twitter, facebook etc.. to put your voices out there

You`ll of course have to deal with the trolls (usually on twitter) who hate autism portrayed as anything other than a superpower that shouldn't be touched.

My advice here is to just ignore them. Don't waste your energy trying to challenge their delusions just stick to your objective which is to get our voice heard by the decision makers.

Good Luck :D
Right now I really need someone to help me with social medai stuff and socailizaton and people skills stuff as i can't get my message off that well.


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I run a discord for moderate-severely autistic people if anyone would like to join. You can also contact me on discord @Pieplup or by email at [email protected]


carlos55
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18 Jan 2023, 8:25 am

Pieplup wrote:
carlos55 wrote:
I very much support you and wish you luck. In fact most of what you say is what I've been saying for quite some time on WP.

Maybe you should try to connect to The National Council for Severe Autism( link) since combined forces will have a stronger impact

https://www.ncsautism.org/

They seem to be the dominant spokes group for more disabling autism attending meetings & liaising with various groups etc.. in the political space.

Maybe if you can get a petition among US autistics that share your view, that would be quite a powerful voice against the stuff that`s happening now. (Advise you to stick to US names, since you`ll find the relevant bodies not interested in non US people)

Maybe you could use social media like Twitter, facebook etc.. to put your voices out there

You`ll of course have to deal with the trolls (usually on twitter) who hate autism portrayed as anything other than a superpower that shouldn't be touched.

My advice here is to just ignore them. Don't waste your energy trying to challenge their delusions just stick to your objective which is to get our voice heard by the decision makers.

Good Luck :D
Right now I really need someone to help me with social medai stuff and socailizaton and people skills stuff as i can't get my message off that well.


I would help but IT /social media is not my strong point (too old wrong generation)

As mentioned your best to reach out to those NT groups that are likely to support you and are able to get things moving.

That’s why I mentioned National Council for Severe Autism being the first place to go

Then maybe parents groups and interested scientists many of whom are tired of what’s going on too.

At the same time Organise a petition online maybe contact your political representative too not sure if you call them senators, or governors office?


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Pieplup
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18 Jan 2023, 4:08 pm

carlos55 wrote:
Pieplup wrote:
carlos55 wrote:
I very much support you and wish you luck. In fact most of what you say is what I've been saying for quite some time on WP.

Maybe you should try to connect to The National Council for Severe Autism( link) since combined forces will have a stronger impact

https://www.ncsautism.org/

They seem to be the dominant spokes group for more disabling autism attending meetings & liaising with various groups etc.. in the political space.

Maybe if you can get a petition among US autistics that share your view, that would be quite a powerful voice against the stuff that`s happening now. (Advise you to stick to US names, since you`ll find the relevant bodies not interested in non US people)

Maybe you could use social media like Twitter, facebook etc.. to put your voices out there

You`ll of course have to deal with the trolls (usually on twitter) who hate autism portrayed as anything other than a superpower that shouldn't be touched.

My advice here is to just ignore them. Don't waste your energy trying to challenge their delusions just stick to your objective which is to get our voice heard by the decision makers.

Good Luck :D
Right now I really need someone to help me with social medai stuff and socailizaton and people skills stuff as i can't get my message off that well.


I would help but IT /social media is not my strong point (too old wrong generation)

As mentioned your best to reach out to those NT groups that are likely to support you and are able to get things moving.

That’s why I mentioned National Council for Severe Autism being the first place to go

Then maybe parents groups and interested scientists many of whom are tired of what’s going on too.

At the same time Organise a petition online maybe contact your political representative too not sure if you call them senators, or governors office?
[color=#0066cc] Most likely canadite for the position is a parent or a level 1 who's socially afluent. I posted in an autism parenting group looking for the help. but I guess it might just take time. If you have any skills you think you can offer, let me know we might have something you can help with.


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I am pieplup i have level 3 autism and a number of severe mental illnesses. I am rarely active on here anymore.
I run a discord for moderate-severely autistic people if anyone would like to join. You can also contact me on discord @Pieplup or by email at [email protected]


cyberdad
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20 Jan 2023, 11:49 pm

Pieplup wrote:
Our goal is to give those who struggle to be heard a platform to speak. To raise awareness and combat misinformation. To spread awareness of what life is really like as a higher needs autistic individual. Right now we are small but the hope is we can grow into a large organization that helps higher needs autistic people be heard around the globe. But as high needs autistic people we are very limited, Which is where the allies come in. It's your job to help advocate for our ideas and help get them out there.


If you had asked me 10 years ago I would have joined your advocacy group. Now I am quite jaded. My personal experience with autism advocacy groups is that none of them actually provide any benefit to my child. Secondly there are personal agendas and egos and social exclusion which dominate these groups.

The journey for a parent is a lonely one and I'm afraid we are an advocacy group of 2. Me and my wife.

However, I am curious about your personal interest in HNA people?



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21 Jan 2023, 1:55 pm

Pieplup wrote:
We at HNAA aim to give voice and assist higher needs autistic people in advocating themselves. We are tired of people speaking over us. Our goal is to promote awareness of Level 2s/3s and their experiences and desires. And help put an end to the excessive amount of ableism and abuse we experience as Level 2/3s.

All worthy goals.

Pieplup wrote:
But this movement isn't just about Level 2s/3s it also wants to stop people from trying to say autism isn't a disability or opting it as some new fangled identity.

Very few people are saying it's not a disability. Certainly, mainstream autistic advocates, such as the Autistic Self Advocacy Network, do NOT deny that autism is a disability. Indeed ASAN, like the autistic rights movement more generally, from its very earliest days (see Jim Sinclair's History of Autism Network International), has always seen itself as part of the disability rights movement.

Some people, most of whom (as far as I can tell) are NT parents of high-needs autistic children, complain constantly about people allegedly denying that autism is a disability. In fact, this is usually a straw-man argument being used, falsely, to dismiss mainstream autistic self-advocates.

Although most autistic self-advocates have no issue with calling autism a "disability," many of us are uneasy about calling it a "disorder." Our main issues with the "disorder" framing are:

1) It tends to lead to the prioritizing of efforts to find a "cure" over any effort to make our lives better in the here-and-now.

2) It tends to lead to the prioritizing of therapies that aim to make us seem more "normal" over therapies that would actually help us live better lives.

3) It tends to lead to dismissal of the voices of autistic self-advocates.

Pieplup wrote:
We want to promote the understanding and support of all autistics, so they can live better happier lives.

I fully agree here.

Pieplup wrote:
The best way we can think of to do that is to give voices to those who struggle to communicate.

I fully agree here too.

Pieplup wrote:
the basic idea is to have a central structure of higher needs autistic people then have an outer structure of allies who help advocate for us. But just because you aren't level 2/3 doesn't mean you are excluded from discussion either. Our goal is to give those who struggle to be heard a platform to speak. To raise awareness and combat misinformation. To spread awareness of what life is really like as a higher needs autistic individual.

Certainly, these are important goals.

Pieplup wrote:
Right now we are small but the hope is we can grow into a large organization that helps higher needs autistic people be heard around the globe. But as high needs autistic people we are very limited, Which is where the allies come in. It's your job to help advocate for our ideas and help get them out there. This does not mean speaking for us But amplifying our voices. and Helping us advocate for ourselves when we don't have the energy too.

Sometime soon, I really should add a section to my website for links to pages, blogs, videos, etc. by high-needs autistic people. Are there any links you would especially recommend that I include, besides the links to your own group's Discord and Reddit?

Pieplup wrote:
The goal is to ultimately bring people together everyone affected by autism by raising those who are less able up to a place where they can meet people on even ground. To promote unity. Our vision is to have a place where all people affected by autism whether you are a Level 2/3 a Level 1 a caregiver a professional can exist in harmony without division.

"Without division" is going to be very difficult. There are divisions within every social movement, even the most successful ones.

Pieplup wrote:

I'll keep these links in mind. I'll let you know when I've added the above-described page.

EDIT: In the meantime I've added your links to my general list of Online forums and social media communities for autistic people.


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21 Jan 2023, 11:26 pm

ASPartOfMe wrote:
I agree that it is morally wrong to identify as something you are not be it autistic or black etc. There is nothing questionable about it, it is just bad. Autistics have enough stigmas we have to deal with. Those non-autistics identifying as autistic and faking autism just add more stigmas and stereotypes.

How common is this? Where on Earth have you run into people whom you had reason to suspect of being "non-autistics identifying as autistic and faking autism"? And what were your reasons for suspecting this???

As far as I can tell, the vast majority of self-diagnosed autistic people (1) are sincere, (2) have studied the subject in enough depth that they are highly likely to be correct about themselves, but (3) simply cannot afford the monetary cost of getting evaluated. Being against self-diagnosis, even well-informed self-diagnosis, is classist IMO.

The only kinds of self-diagnosis I would be inclined to object to are (1) ill-informed, spur-of-the-moment self-diagnosis and (2) celebrities talking about how they "might be a little bit autistic." If they are celebrities, they can easily afford to get evaluated, and therefore should either get evaluated or shut up.


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carlos55
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22 Jan 2023, 5:57 am

Mona Pereth wrote:
Although most autistic self-advocates have no issue with calling autism a "disability," many of us are uneasy about calling it a "disorder." Our main issues with the "disorder" framing are:


I suspect that kind of creeping orwellian doublespeak is exactly the kind of thing Pieplup is trying to prevent.

How can a disability not be a disorder :lol: who`s trying to fool who

In case anyone is confused, here`s an English dictionary mention (bolded the most relevant):-

1.lack of adequate power, strength, or physical or mental ability; incapacity.

2. a physical or mental handicap, especially one that hinders or prevents a person from performing tasks of daily living, carrying out work or household responsibilities, or engaging in leisure and social activities.

3. anything that disables or puts one at a disadvantage:
His mere six-foot height will be a disability in professional basketball.

4. the state or condition of being disabled.

5. legal incapacity; legal disqualification.


https://www.dictionary.com/browse/disability


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"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