3 ms·

I have serious doubts that an autistic advocate with low support needs, as opposed to 'neurotypicals' or impacted parents, are meaningfully more qualified to re

I have serious doubts that an autistic advocate with low support needs, as opposed to 'neurotypicals' or impacted parents, are meaningfully more qualified to represent the needs of autistics with high support needs (e.g. severe intellectual disability, nonverbal, severe self injurious behaviors). Those autism are very very different with very very different lived experiences....and yet, well-meaning autistic advocates often bristle at that idea, almost as if it is an attempt to divide and and destroy autistic advocacy. The neurodiversity vs profound autism battle for hearts and minds continues to rage, and even threatens how and what autism research gets conducted...sometimes with good consequences, sometimes with poor consequences. I am a proponent of finding neurobiological bases for subgrouping autism into different clinically meaningful etiologies so that the debate can move forward productively. Its one reason that more and more I'd rather forgo acquiring non-autistic controls in my studies, but just look within the autism sample for how to parse the heterogeneity into homogeneous subsets

cardanome 10mo ago
> I have serious doubts that an autistic advocate with low support needs, as opposed to 'neurotypicals' or impacted parents, are meaningfully more qualified to represent the needs of autistics with high support needs You think a parent without any autism is more qualified to speak than someone who has autism but a different cluster of symptoms? Because being a parent makes you an expert on what exactly? The is a video of the spokesperson of autism speaks. Her autistic child is in the room and can hear everything. She talks about how bad it is for her to have an autistic child. How she wanted to kill herself by driving down a cliff. Again, while her autistic child is in the room. She is acting like her child is not even a person. Autism Speaks is a hate group of abusive parents. Those advocates with low support needs are the ones that are actually making an attempt to give those high support needs a voice. Not by speaking for them but by taking down barriers so that they can advocate for themselves. Because guess what? High Support needs autistic people are still people. Just because someone is non-verbal does not mean they can not communicate in other forms. They can advocate for themselves if given the tools. Support needs are multi dimensional, one person might have sensory issues, another no sensory issues at all but more social issues. Who has more support needs? They are different. And they can change. You can learn better coping skills, you can need more or less support as you age.
- anematode 10mo ago
  The parents you talk about just seem like assholes. > Those advocates with low support needs are the ones that are actually making an attempt to give those high support needs a voice. Having low-support-needs autism is neither necessary nor sufficient for being a good voice for others. In fact, it can be a very bad thing, if they imply that the problems they face are similar to problems faced by high-support-needs folks. The focus in the media on low-support-needs individuals gives people the wrong impression of the autism spectrum's individual experience and broader societal impact. I think a better form of advocacy is the YouTube channel "Special Books by Special Kids," which doesn't make a point of the channel's author having a disability (no clue whether he does), but rather just introduces viewers to a broad variety of people.
- GoatInGrey 10mo ago
  > Autism Speaks is a hate group of abusive parents. It's an indicator of the current state of affairs in the social media autism space that the only organization focusing on reducing the suffering of individuals with higher levels of dysfunction (i.e. requires lifelong support for basic needs) is demonized to this degree. Though it also makes sense as the most disabled autistic individuals do not post online.
  - estimator7292 10mo ago
    Yeah except their treatment is just conversion therapy. It's inhumane.
    - kulahan 10mo ago
      It’s understandable that people with a milder form of autism would find it reprehensible that people want to “fix” them rather than simply accept a different type of person exists, but this really just ignores people at the harshest end of the spectrum who might be able to live an independent life if a cure were developed. That’s kinda the whole argument behind more subgroups. Mild autists don’t need a cure. A subgrouping would help explain this. There are plenty of conditions which are just “part of who you are” that still probably should be cured if possible, if for no other reason than to improve their quality of life.
amypetrik8 10mo ago
there's a bunch of BS going on with autism that I find very obnoxious 1) I see autism as non-verbal, no concept that other people or conscious minds exist. That's what -actual- autism is to me. And there are plenty of people like that. 2) In light of the above definition, I see the concept of "autism is on a spectrum" as extremely disrespectful to both autists and non-autists. For example, if I have a deformed pinky toe I'm not now on the "paraplegic spectrum disorder". If my IQ is 99 I'm not on the "braindead spectrum disorder" and so on. Such a system applies a negative label to people with the most extreme form, and simultaneous everyone else gets a taste of that label too. 3) the above smooshiness of definition has caused autism to be embraced by people - people who have legitimate mental disorders - just not autism. Moreso the cluster B family of disorders i.e. the manipulative and dramatic family. They are "neurodivergent" vs "neurotypical" and now they have just conjured manipulative leverage from thin air.

cardanome 10mo ago

> I have serious doubts that an autistic advocate with low support needs, as opposed to 'neurotypicals' or impacted parents, are meaningfully more qualified to represent the needs of autistics with high support needs You think a parent without any autism is more qualified to speak than someone who has autism but a different cluster of symptoms? Because being a parent makes you an expert on what exactly? The is a video of the spokesperson of autism speaks. Her autistic child is in the room and can hear everything. She talks about how bad it is for her to have an autistic child. How she wanted to kill herself by driving down a cliff. Again, while her autistic child is in the room. She is acting like her child is not even a person. Autism Speaks is a hate group of abusive parents. Those advocates with low support needs are the ones that are actually making an attempt to give those high support needs a voice. Not by speaking for them but by taking down barriers so that they can advocate for themselves. Because guess what? High Support needs autistic people are still people. Just because someone is non-verbal does not mean they can not communicate in other forms. They can advocate for themselves if given the tools. Support needs are multi dimensional, one person might have sensory issues, another no sensory issues at all but more social issues. Who has more support needs? They are different. And they can change. You can learn better coping skills, you can need more or less support as you age.

anematode 10mo ago
The parents you talk about just seem like assholes. > Those advocates with low support needs are the ones that are actually making an attempt to give those high support needs a voice. Having low-support-needs autism is neither necessary nor sufficient for being a good voice for others. In fact, it can be a very bad thing, if they imply that the problems they face are similar to problems faced by high-support-needs folks. The focus in the media on low-support-needs individuals gives people the wrong impression of the autism spectrum's individual experience and broader societal impact. I think a better form of advocacy is the YouTube channel "Special Books by Special Kids," which doesn't make a point of the channel's author having a disability (no clue whether he does), but rather just introduces viewers to a broad variety of people.
GoatInGrey 10mo ago
> Autism Speaks is a hate group of abusive parents. It's an indicator of the current state of affairs in the social media autism space that the only organization focusing on reducing the suffering of individuals with higher levels of dysfunction (i.e. requires lifelong support for basic needs) is demonized to this degree. Though it also makes sense as the most disabled autistic individuals do not post online.
- estimator7292 10mo ago
  Yeah except their treatment is just conversion therapy. It's inhumane.
  - kulahan 10mo ago
    It’s understandable that people with a milder form of autism would find it reprehensible that people want to “fix” them rather than simply accept a different type of person exists, but this really just ignores people at the harshest end of the spectrum who might be able to live an independent life if a cure were developed. That’s kinda the whole argument behind more subgroups. Mild autists don’t need a cure. A subgrouping would help explain this. There are plenty of conditions which are just “part of who you are” that still probably should be cured if possible, if for no other reason than to improve their quality of life.

amypetrik8 10mo ago

there's a bunch of BS going on with autism that I find very obnoxious 1) I see autism as non-verbal, no concept that other people or conscious minds exist. That's what -actual- autism is to me. And there are plenty of people like that. 2) In light of the above definition, I see the concept of "autism is on a spectrum" as extremely disrespectful to both autists and non-autists. For example, if I have a deformed pinky toe I'm not now on the "paraplegic spectrum disorder". If my IQ is 99 I'm not on the "braindead spectrum disorder" and so on. Such a system applies a negative label to people with the most extreme form, and simultaneous everyone else gets a taste of that label too. 3) the above smooshiness of definition has caused autism to be embraced by people - people who have legitimate mental disorders - just not autism. Moreso the cluster B family of disorders i.e. the manipulative and dramatic family. They are "neurodivergent" vs "neurotypical" and now they have just conjured manipulative leverage from thin air.