The main argument in favor of treating it as a single condition tends to come from the advocacy side, rather than from the diagnostic side.
In terms of advocacy, there is strength in numbers, and arguably having such a large autism community has been good for both research and support. Potentially breaking that up into several smaller communities might lead to an overall decrease in impact.
On the other hand, pretty much everyone with autism, or families who have children with autism, will tell you that there is wide variation in both severity and presentation. And I think most would welcome better definition of subtypes.
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
> 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.
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.
1. I am not claiming that low support-need autists cannot advocate for hight support need autists. I am saying that I have encountered little evidence to support the idea that low support-needs autists have more insight into the needs and interests of someone who is nonverbal, intellectually disabled, and has severe self-injurious behaviors than others, including those who know and support those individuals daily.
2. Sometime being non-verbal is about trouble with expressive communication. But for others, it is an all encompassing impairment and communication, if much at all, has huge subjective/interpretative component by the observer. fMRI in these indivuals show near absence of activation differences for contrasts between passively listened to language and random noise. They absolutely cannot advocate for themselves, and to not understand this, which occurs in 10-20% of autism, suggests a blindness to the full spectrum, because those people are not seen, they are not on Twitter, they are at home with their loving and hardworking caregivers who should have a seat at the table.
I'm pretty sure, that parents, that have autistic kids have not only autistic genes, but also some autistic behaviour. My mother is not diagnosed and she is quite unhinged female and sometimes also very logical. And she also have been talking about me crap with other people, so it perfectly describes autistic parent.
Unfortunately, but the main issue is that people, that are trying to take control of talking space are acting like humans do and in autistic circles they are most efficient at taking over... also, the obsession levels in activity is quite high, as that is topic that they are interested in.
> 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.
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.
This is a complete lie. Autistic advocacy group care a lot about people with higher needs.
Meanwhile autism speaks spends money for anti-scientific research to find out whether vaccines cause autism and how to find a "cure" for autism. Such a cure can not exist. Autism is something you are born with and that is part of you.
If you knew anything about autism then you would know that we speak about levels of care needs, not "low/high functioning". So either you are ignorant or did choose to use hurtful language.
> Such a cure can not exist. Autism is something you are born with and that is part of you.
Signs of autism generally show up in early childhood, but it has not been proven that it is something a person is born with. Vaccines have been studied enough to rule them out, but there are still a zillion other things that babies today are exposed to that could be a factor, from antibiotics to endocrine disrupting chemicals to microplastics to viruses or even something we're not even considering medically today.
Also, tons of birth defects and inborn diseases can be cured. We cure cleft palates and spina bifida routinely. We manage diabetes and Phenylketonuria effectively enough that patients can live regular lives. Here's a paper published in the prestigious Cell journal covering 700 different genetic disorders which can be treated today: https://www.cell.com/ajhg/fulltext/S0002-9297(25)00110-7
It's possible that in the future autism will have a cure, a preventative measure or a highly effective treatment.
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.
I think “neurodivergence” is a better label if the goal is gaining strength in numbers. It fully encompasses autism and autism spectrum related conditions, plus ADHD and others. A lot of people don’t want the label “autistic,” but share experiences with people who do, and would love to offer solidarity as an “inside” rather than “outside” member of the community. We now have “AuDHD spectrum” as a thing, but really, I think optimum numbers might come from including folks who identify as “broadly neurodivergent.”
It also leaves room to start distinguishing/separating out more subtle variants of what we currently umbrella as “autism,” perhaps making it better defined in the future. And I kind of suspect doing this with “less profound” neurodivergencies could help folks with “more profound” (and rarer) cases.
To look at a historical case: Gay Rights didn’t make a lot of headway. But adding lesbians, trans folks, etc. ultimately did a lot of good for that community in the US.
I was recently labelled neurodivergent by a colleague at work, as far as I can tell this is simply because I am good with numbers and don't like parties. I'm not sure how I feel about this, I wouldn't say I am Autistic or show any representative characteristics.
Autism or well any form of neurodivergence are about how you work on the inside. It is not possible to observe how a person behaves and just diagnose someone. That is why getting a diagnosis is a whole process involving a trained professional.
Your colleague is full of shit. Generally, neurodivergence is for everyone who regularly experiences that the way their brain works causes them trouble.
Self diagnosis is surprisingly accurate but people also tend to under estimate the severity of their symptoms.
Or so you think. Humans aren't any good at that whole "self-awareness" thing.
Even the "no empathy" sociopaths can spend decades thinking that they're perfectly normal, everyone is like them, and people just pretend to be sad and grieving at the funerals because that's some kind of established convention and breaking it would be very rude.
What I'm saying is: maybe you just think you don't show any signs of autism - because you think your experience is "normal", and you think that everyone has the same struggles as you do, even when it isn't true.
Or maybe you genuinely aren't autistic at all! It's just very, very hard to say at a glance.
> The main argument in favor of treating it as a single condition tends to come from the advocacy side, rather than from the diagnostic side.
Seeing it as one single conditions is established scientific consensus not some advocacy thing.
The diagnosis "Asperger's" was invented by Hans Asperger, a Nazi scientist that was responsible for the murder of many autistic children. It was never about science. It was invented because he thought that some autistic children might have a potential to become scientist and the like and therefore useful to Nazi Germany and some might not.
Hans Asperger decided which autistic children should be murdered and which one to be spared purely based on ideology.
Autism is something you are born with but support needs can change over your life depending on many factors like you environment, if you are diagnosed early and so on. They are not fixed.
> The diagnosis "Asperger's" was invented by Hans Asperger
No, it wasn't. The diagnosis of “autistic psychopathy”, which loosely corresponds to much of the range of the modern diagnosis of autism spectrum disorder was invented by Hans Asperger (Asperger does not seem to be the first to have described the condition, though he invented that name; a Societ doctor seems to have recognized a similar condition a couple decades earlier.) The distinct separate diagnoses of “Asperger’s syndrome” was invented later (the term seems to have first been used in 1976), and roughly corresponded to the “higher-functioning” individuals within his diagnosis of “autistic psychopathy” that Asperger described as potentially socially useful.
In terms of advocacy, there is strength in numbers, and arguably having such a large autism community has been good for both research and support. Potentially breaking that up into several smaller communities might lead to an overall decrease in impact.
On the other hand, pretty much everyone with autism, or families who have children with autism, will tell you that there is wide variation in both severity and presentation. And I think most would welcome better definition of subtypes.