Rejecting it will alienate the people who rely on it.
Hi, I’m Pogo. As you can see, my account’s fairly new so I might come across as a concern troll or something but I assure you that I am not new to the community (and the threadiverse) in general.
What I find concerning about existing autistic communities is that some can lean heavily towards the social model of disability. This normally is not a concern as the social model of disability empowers autistic people and allows them to advocate for themselves, but there are certain behaviours associated with this crowd that are concerning for current and future participants. Particularly participants who are diagnosed with level 2 or 3 autism under the DSM-V or are referred to with relevant terminology.
A major source of confusion and misinformation in the community is that functioning labels and the DSM-V diagnostic levels are the same. This is incorrect and results in stigma against DSM-V diagnostic levels. It is understandable that people who have not heard of the diagnostic levels or were not diagnosed under the DSM-V would assume that they are used in the same way as functioning labels. DSM-V diagnostic levels are assigned to an autistic person on diagnosis and they indicate the formal supports they require. This diagnostic level is used by medical professionals to ensure the autistic person is getting the required supports. Unlike functioning labels, the DSM-V diagnostic levels are directly informed by the person’s experiences and are assigned by qualified professionals. They are not assigned based on uninformed assumptions and do not force an expectation upon a person.
Another issue I have noticed within discussions is that advocating for more accurate terminology can be misdirected to deny people the autonomy to use the terminology they find comfortable for themselves. This can be seen with people attempting to “correct” someone else because they were using a term that is considered outdated or offensive. This behaviour is unproductive for autistic advocacy and should be discouraged. It does not advance autistic acceptance and only hurts our own people.
With conflicts between the social and medical models of disability, I have observed people who are averse to identifying autism as a disability or acknowledge that autism can have inherent difficulties that will not be solved by societal change. This is most commonly expressed for social difficulties in interactions with neurotypical people. I believe that this aversion is due to existing stigma against autism and disabilities in general as being negative so people desire to disassociate themselves from it. Unfortunately I do not think this is helpful for the autistic community nor for autistic advocacy. Disability is simply the lack of ability and is morally neutral. Recognising this may reveal internalised ableism that can be resolved through self-acceptance and compassion. Sugarcoating the impacts of disability with “acceptable” terminology invalidates the real experiences of autistic people and alienates them from a community that should include them by default.
I want to be able to interact with people like me. I want to be able to relate to your experiences. I cannot do that if my existence is denied by default. I cannot do that if my words are silenced. I cannot do that if I feel like an outcast within outcasts.
Thanks for reading.
Your post is well-written. I’m feeling more colloquial at the moment.
I can’t even with these groups. Denying people the right to label themselves or their children in a way that helps communicate their struggles in a quick and widely-understood way is borderline bullying. And I’ve seen it devolve into bullying, especially bullying parents of level 3 autistics. I’ve also seen people bullied for calling themselves “high functioning.” It’s not like they’re bragging, they’re just trying to communicate their diagnosis and likely their needs. They may even be trying to be considerate by not overstepping as in, “I am/my child is high functioning so this might not apply to your child, but have tried…?”
The language policing is completely out of hand. The way they try to control your opinions is out of hand. Many online groups are essentially cults. A lot of socially disabled/handicapped autistic people are really experiencing a lot of pain from the way things have been. The groups/communities that try to counter this strict, high control atmosphere are a little better, but a lot of them let “free speech” go too far and they end up containing bigotry. Which sucks because most of the people seem good and these groups are even more diverse in that I’ve seen a lot of level 2s in them (whereas they get kicked out of the high control groups because they struggle to reform their vocabulary, or perhaps they refuse to ‘play games’ with controlling moderators).
I understand it’s difficult because autistic people tend to like rules and rigidity, but we really do need to find the medium between hyper controlling every member in a group (and shunning people for even slight difference of opinion) and a total free-for-all (and not banning anyone even if they’re trolling or being bigoted etc.).
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Personally I’m partial to the Aspergers label making a comeback. I never would have found out about my own ASD if it weren’t for Kyle Hill’s video “Autism is my Superpower”. I know lots of people like to think of it purely in terms of a disability, but it does genuinely provide some advantages. I certainly have challenges, but there are also things I can do that nobody I know can do. That can be worth celebrating. It’s not just a disability.
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Even the author of the social model published an article years lates to clarify what the model is supposed to mean and emphasized that it was never supposed to replace the medical one.
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Agreed with most of your points, it’s good to point out that the medical and the social model of disability shouldn’t completely replace the other. Sometimes, in some cases, it’s clear that choosing one over the other comes simply due to the lack of better options: virtually no person with limited mobility would reject a medical solution that allowed them to walk, run and jump.
However, there are specific cases where we should be making the choice to prioritize the social model. Specifically,
I have observed people who are averse to identifying autism as a disability or acknowledge that autism can have inherent difficulties that will not be solved by societal change. This is most commonly expressed for social difficulties in interactions with neurotypical people.
Framing the issue this way implies the idea that the correct form of communication is neurotypical communication, thereby framing other forms of communication as defective or not worthy of being accepted. It is good to have the ability to communicate effectively with allistics - if you want to develop and cultivate that skill, you have my blessings and my support. But it is also good to have the ability to communicate effectively with autistics, yet your framing may contribute to drown that consideration.
At the end of the day, autistics and allistics have different preferred forms of communication, and you may be successful at masking with a communication style that doesn’t come natural to you for a day, a week, a month, years - but all of that is extra effort you’re loading on your back for the sake of not coming off as weird, and if you want to live a whole life masking under those circumstances, you’ll burn yourself out and eventually come across as strange anyway. If this is the solution we’re supposed to follow, we’re still going to end up as second-class people, who have to put in more to achieve the same and will be discriminated for not trying hard enough to be who we are not.
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I believe the hybrid model is usually called the biopsychosocial model.
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A well-written and thought-provoking post. I’ve already seen some discussion in the comments that highlighted some of my thoughts, so I’ll avoid being redundant and will just say thanks for this contribution. I really hope this is kind of discussion is reflective of this community going forward.
There are even some blind people who claim that blindness isn’t a disability. You can feel empowered about your lot in life without outright rejecting facts. We are all different and not everybody has the same abilities
