Pathologizing autistic behaviors is not the right approach here. Most autistic behaviors are harmless except insofar as allistic (non-autistic) people provide unnecessary consequences for it and through incompatibilities. We don't say that a Linux workstation in a network of Windows computers is broken or needs to be fixed (or visa-versa), but rather we recognize that the problems are due to the differences. As such, attempts to "cure" or "prevent" autism are actually an eugenic attempt to remove harmless variation that many people irrationally deem to be objectionable.
For example, it is commonly stated that autistic people have communication deficits, but this is just a communication difference. We can see this because if a communication task is given to a group of only autistic people they perform comparably to when the same task is given to a group of allistic people. Problems only take place when the group is mixed with both autistic and allistic people being present. The keyword "double empathy problem" can be used to find more information about this. (https://doi.org/10.1177/1362361320919286)
As another example, allistic people tend to very harshly judge autistic people for extremely subtle cues that they are different. When allistic people are shown recordings of autistic people communicating and of allistic people doing similiar tasks they, within less than a second, judge the autistic people very harshly. This effect persists when controlling for the content of the communication. (https://doi.org/10.1038/srep40700) Of course, doing anything that actually warrants such a judgement in a context like that is impossible so this is a bias against autistic people. I think that this can be compared to implicit racial bias: it is something that most people need to learn to consciously identify and then not perpetuate and is not due to any faults with the victim.
There are higher support needs autistic people who need help with activities of daily living. In my opinion, though, in many cases this is not autism but rather autism with an accompanying intellectual disability and the intellectual disability is the reason for higher supports needs. In some cases this could also be caregivers unnecessarily pathologizing behavior and then convincing someone that they need more support than they really do, which I have seen in real life.
There are two ways that something can lead to needing help with daily living:
- society rejects the trait without good reason, so then someone needs help to deal with this rejection
- the trait leads to an inability to do something that the person wants to do, irrespective of any societal concerns
I am okay with calling the latter a disorder, but not the former. The traits that are recognized as part of autism (social incompatibilities, stimming, special interests, hyper or hyposensitivity — these are the DSM traits for autism rephrased more politely) are clearly in the former case. Traits that lead to being unable to function (such as an inability to feed one's self) are not on this list, but rather are characterized by intellectual disability.
It wasn't invented on the spot. In the past, I have thought extensively about what should be considered a disorder, if the concept of "disorder" is even coherent, and how this applies to what treatments should be performed, available, and researched.
There is a big difference between "neurodiverse" people and severely autistic people facing huge challenges in their life. Are you seriously dismissing the idea of helping treat that latter group?
" this is not autism but rather autism with an accompanying intellectual disability and the intellectual disability is the reason for higher supports needs. "
This is a self-contradictory statement. But what do you think people are researching if not those intellectual disabilities -- why they occur and how they can be prevented.
> There is a big difference between "neurodiverse" people and severely autistic people facing huge challenges in their life. Are you seriously dismissing the idea of helping treat that latter group?
The people who you are referring to as neurodiverse also face huge challenges. When everyone hates you just for being yourself and not hurting anyone, that is a huge challenge. This can threaten peoples ability to make a living. This can result in people having to live in abusive situations due to lack of financial — not practical — ability to live on their own. When you need to do stimming to feel internally at piece but most other people will perceive this as a threat, that is a challenge. When you need protection (e.g., headphones) from sensory input in the outside world, but the world does not allow this in some cases (for example a job may deem it to be "unprofessional") that is also a threat. Supports are needed in this case, and these supports are for the world to lighten up about allowing these things.
Also, there are, perhaps more challenging, problems that what you call "severely autistic" people face. We should also support these people. For these people, the supports could be similar as above (the world lightening up, perhaps about the requirement that everyone be productively employed) or they could be different (a medical treatment that increases intelligence). Such a medical treatment needs to be performed ONLY with the informed consent of the patient, to the degree that that is possible with the communication difficulties.
> This is a self-contradictory statement. But what do you think people are researching if not those intellectual disabilities -- why they occur and how they can be prevented.
I think that this type of research is unnecessarily lumping intellectual disabilities with the traits in what you call neurodiverse people. I am much more open to helping people with intellectual disabilities, to the extent that these people want that help, than I am to treatments that attempt to normalize neurodiverse people. The word "autism" refers to both groups, so research that is about "curing autism" is at least in part about normalizing neurodiverse people.
Thanks for you comment. I was only splitting the spectrum into the two broadest categories for rhetorical simplicity.
Of course I also agree that society needs to become more accepting and supportive of all types of people. To put it simply, we should not become a bioengineered dystopia. We can do two things at once though.
>I think that this type of research is unnecessarily lumping intellectual disabilities with the traits in what you call neurodiverse people.
This is an unfair and unsubstantiated view that you are projecting onto the researchers. I give benefit of the doubt that these professionals have a far better understanding of the science, sociology, and ethics of the topic than any of us. We need better understanding and improvement in all the areas right now.
The medical system has a history of mistreating marginalized groups (of which neurodiverse people are definitely an example), and there are a huge number of people who fund and perform research aimed solely at eradicating all forms of autism. Autism Speaks is one such group (which is an ironic name since the views of the organization differ greatly from those of most autistic people), and they are quite active in autism research and well-funded. As such, I do not think that giving the benefit of the doubt is reasonable. Furthermore, even if the researchers have an excellent and completely ethical view of autism, many people reading about the research will not so giving such a perspective remains valuable.
If can be easy to say that we should simply explore all avenues of research, and in an ideal world this would be true, but we do not live in an ideal world. There are two concerns with this type of research:
- it has an opportunity cost of research that might be more effective (for example medical treatments that could help with sensory hypersensitivity under an informed consent model could be a good result, or research that helps us understand what, exactly, leads allistic people to hate autistic people so much so that we can improve communication in both directions)
- it creates new abilities for those who would do eugenicist harm, even if they are well-meaning
I think you're engaging in the no-true-Scotsman fallacy with the claim that highly autistic people with a lot of special needs are really "autistic with intellectual disabilities". I disagree. They're simply more autistic and more impacted than either of us.
They did not say no true autistic person are intellectually disabled. They said they are overlapping groups. Like Scotsmen and people who put sugar in porridge.
They're saying that no true definition of autism can contain intellectual disability by classifying any intellectual disability in an autistic person as a distinct, totally independent condition.
> In my opinion, though, in many cases this is not autism but rather autism with an accompanying intellectual disability and the intellectual disability is the reason for higher supports needs.
Which does not imply "no true definition of autism can contain intellectual disability".
Do you have autism or ADHD? This is actually a really contentious issue. Tons of people with the condition are happy to let others be themselves, but want to be cured.
With ADHD, it's actually a little crazy to me that people consider it "harmless". There's a ton of tangible ways that it hurts relationships and goals. I can't even make dinner and tidy house; doesn't matter how much time I have.
I will say the medicine made me a little more robotic and took a bite out of my personality; but this was a small nibble compared to not being able to do almost anything comfortably, and the consequences of that.
It's really damaging to your personality to not be able to conversate with people and understand each other. It's really damaging to your personality to not be able to practice your hobbies with friends. I really don't feel like my "true" self, and see others able to effortlessly be that person.
For example, it is commonly stated that autistic people have communication deficits, but this is just a communication difference. We can see this because if a communication task is given to a group of only autistic people they perform comparably to when the same task is given to a group of allistic people. Problems only take place when the group is mixed with both autistic and allistic people being present. The keyword "double empathy problem" can be used to find more information about this. (https://doi.org/10.1177/1362361320919286)
As another example, allistic people tend to very harshly judge autistic people for extremely subtle cues that they are different. When allistic people are shown recordings of autistic people communicating and of allistic people doing similiar tasks they, within less than a second, judge the autistic people very harshly. This effect persists when controlling for the content of the communication. (https://doi.org/10.1038/srep40700) Of course, doing anything that actually warrants such a judgement in a context like that is impossible so this is a bias against autistic people. I think that this can be compared to implicit racial bias: it is something that most people need to learn to consciously identify and then not perpetuate and is not due to any faults with the victim.
Good resource on this: https://www.youtube.com/watch?v=A1AUdaH-EPM
There are higher support needs autistic people who need help with activities of daily living. In my opinion, though, in many cases this is not autism but rather autism with an accompanying intellectual disability and the intellectual disability is the reason for higher supports needs. In some cases this could also be caregivers unnecessarily pathologizing behavior and then convincing someone that they need more support than they really do, which I have seen in real life.