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How can neurotypical people understand what being on the autism spectrum is like?

Image credit: https://unsplash.com/s/photos/virtual-reality

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Spook Louw
Spook Louw May 02, 2021
Can we come up with ways for non-autistic people to get a glimpse of what it feels like to be on the autism spectrum?

In order to better understand autism, not just scientifically, but also emotionally, I think it is necessary for us to get a better feel for it. The difference between sympathy and empathy can be vital when trying to provide support for someone.

If there was a good way to simulate the experience it could help neurotypical people better understand and get along with neurodivergent people. This is especially important during childhood where wrong interactions can leave psychological scars for life.

Auti-sim was a game created to recreate some of the hypersensitivity that is often associated with autism, but technology has evolved a lot since its production and it is by no means a complete portrayal.

Carly's cafe is a video created by Carly Fleischmann, an artist on the autistic spectrum, to portray her experience with autism.

Walking down the street is a video by Craig Thompson comparing how something like walking down the street, which might be a mundane activity for the majority of the population might be horrifying for someone on the autism spectrum.

VR technology has been used to raise awareness about and help people on the autism spectrum before, but it has been done for taylor-made situations.

Input from people on the autism spectrum would be greatly appreciated. I don't know much about it, but I am eager to understand. Except for the sensory overload, which seems to be a common occurrence in the accounts from people on the autism spectrum, what else should be recreated in the experience and how can we do it?

[1]https://youtu.be/y4vurv9usYA

[2]https://www.forbes.com/sites/solrogers/2019/04/03/how-virtual-reality-can-help-those-with-autism/?sh=f933fe5198e8

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Danielle Jun 05, 2021
HI I am just getting round to having a think now about how I could contribute some ideas. I like how you explore the concept of going into our distress mode with VR but that is of course complex because we are all impacted in different ways. I have a constant tiredness and an overwhelming feeling that I can't keep up with the world most days. Even people who are well meaning sometimes try to rush my processing and complete tasks for me due to their impatience or genuinely wanting to help make things easier for me but this hits my confidence like a truck and more than anything no matter how long I may take. I just want to be allowed to complete things in my own time and way. A world that remembers that people process information at different speeds could be useful to many autistic people I feel. in Belfast they have a jam card created by the wonderdul people at NOW Group where I volunteer and it is a visual way (via app) to alert people that we need extra time. I think it's. an amazing idea and it's giving many confidence. I'm struggling to find a situation where I feel ok to use it because people gaslight me all the time and say I don't look autistic and can't be disabled and that is extremely distressing for me to the point I avoid those interactions at all costs and at worst it makes me feel like I can't keep going because my reality is invisible to others and I end up feeling very alone. Familiar things make me feel more comfortable when I am in neurotypical environments and seeing others like me or efforts to include me brings me a feeling of safety and reminds me I'm not all alone even when my head has me completely stuck in the thought that I am or past traumatic interactions and rumination
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Danielle3 months ago
That's no problem thanks for asking for my opinions. It would be complicated to represent everyone's experience and I do think your other approach sounds much more promising.
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Spook Louw
Spook Louw3 months ago
Thank you so much for taking the time to comment Danielle!

As Povilas S noted, we definitely need and value contributions from people like yourself with personal experience.

I'm beginning to think that we might need to change the wording for the idea of having VR simulate what people with autism experience, because, as you mentioned, everyone is affected in such a variety of ways, it'd be almost impossible to simulate exactly what every person experiences. Instead, perhaps we should focus more on illustrating to people who do not have autism, how changes in their reality and sensory functions could complicate doing things. Instead of trying to say "this is what it's like to have autism", rather saying "things work differently for people with autism, this is what it's like trying to do things when some of the senses and sensations you are used to suddenly change or get amplified."

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Povilas S
Povilas S3 months ago
Hi Danielle, welcome, and thanks for such an honest contribution! :) This session needs contributions from people on the spectrum, so we highly appreciate it. It's great that you express what exactly bothers you regarding interactions with neurotypical people and how can this be improved/avoided. That's doing exactly what this session is about - helping neurotypical people understand what autism is like and relate to that. I think that "a world that remembers that people process information at different speeds" would be good not only for autistic people, but whole society in general. I also have a rather slow processing speed, even though I'm not autistic, so can definitely relate to that.

Could you tell a bit more about that app you find useful? As I understand it serves as a way of communicating the need for extra time for people on the spectrum who are non-verbal or when it's difficult to communicate it verbally due to the emotional tension that builds up as a reaction to the situation? Sorry if I'm getting something wrong, I don't know much about autism, therefore trying to learn.

Be forced into a routine

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Spook Louw
Spook Louw May 02, 2021
Many people with autism tend to have strict routines, rituals and obsessions. The VR systems could be programmed to go into "upset mode", which will be uncomfortable for the user, whenever a certain routine or ritual is skipped, or a special item is not in its exact place.

Taking a specific route to a place you visit regularly, touching an item (a button could be installed in a toy that disarms the alarm in the VR set) every time you come within a certain range of it, or spending an allocated amount of time doing something every day could help us understand how autism can affect everyday life, as well as why certain things are extremely important to people with ASD.

[1]https://raisingchildren.net.au/autism/behaviour/understanding-behaviour/obsessive-behaviour-asd

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Darko Savic
Darko Savic4 months ago
The AR (augmented reality) set would need to incorporate a pretty powerful AI that can "understand" when the person has diverged from the ritual and turn on the "upset mode".
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Spook Louw
Spook Louw4 months ago
Darko Savic There are ways to simplify that, there could be an alarm that goes off every couple of hours unless a certain action is taken to disarm it, even something as simple as going to press a button in another room would work.
After the user has inevitably forgotten to do it a couple of times, they might be more understanding of people with ASD sticking to their routines.
The point is not to recreate the symptoms of autism completely, but rather to show neurotypical people that something they consider inconsequential and unimportant could have a big effect on your day and hopefully get them to support and even help facilitate the routines and habits of the people in their lives who have autism.

Distractions

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Spook Louw
Spook Louw May 02, 2021
In order to simulate the symptom of being easily distracted, as described by many with autism, the VR headset could be programmed to sporadically focus on a certain item and blur out the rest, or light could be increased in different areas of the user's view, forcing them to look in an opposite direction, similar to the way people with autism have described constantly looking around. This can also be done by sporadically introducing dots in the user's vision which they then need to focus on.
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Darko Savic
Darko Savic5 months ago
Add the headphones and do the same for audio simultaneously. Make it pass-through audio and video so that you can experience your real surroundings but augmented with distractions.

Then go mingle with people and have a few of them strike up conversations with you. Visit a supermarket in peak hour, a nightclub, etc.

The smell could be included. Also, a tactile vest that pokes into your back at random areas (https://youtu.be/4c1lqFXHvqI?t=532). The vest could be heated and cooled at random.

Try to concentrate under extreme conditions (a series of games)

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Darko Savic
Darko Savic May 02, 2021
Come up with a series of games (in person) where a neurotypical person has to concentrate on a task while being overwhelmed by various stressful situations:
  1. Have a meaningful conversation with someone while boxing against 2 opponents (light contact sparring). If necessary, sporadically turn off the lights for a second.
  2. Play chess with someone while being interviewed. Sporadically play loud sounds of glass shattering, firecrackers going off, children playing, etc.
  3. and so on
Have each person go through a few such games and try to overwhelm them in each until they can't take it anymore.

Would this help a neurotypical person appreciate how someone on the autism spectrum gets to the point of meltdown?

Made up phrases and metaphors in conversations

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Darko Savic
Darko Savic May 02, 2021
In conversations with non-autistic people, at random make up phrases and metaphors and act as if they are perfectly normal, common, and well understood by everyone. If they show confusion just continue as if nothing happened. If they stop you to ask about it, say "I'll tell you in a minute" and continue with the story.

In the end, explain that neurodivergent people that are on the autism spectrum often have a difficult time working out idioms, metaphors, sarcasm, etc. This is how it feels.

For you, this is an opportunity to practice your poker face while handing out unsolicited lessons and spreading awareness:)
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Spook Louw
Spook Louw5 months ago
Or, as an exercise, you can refrain from speaking at all and getting through your day. 40% of children with ASD are non-verbal according to https://www.healthline.com/health/autism/nonverbal-autism#symptoms.

Movies and TV series depicting autistic characters

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Povilas S
Povilas S Jun 05, 2021
Even though this is not as direct as having a VR experience simulating sensory input of an autistic person, movies and TV shows centering around or at least involving autistic characters can help the viewers to not only understand better what living with autism looks like from the outside, but also, and perhaps more importantly - enable to relate with autistic people emotionally before (or in addition to) knowing such people in real life.

One good example is a TV series Atypical. Its main character is an autistic 18-year-old - Sam, and the plot centers around the events of his life as well as life of his family members and friends. Even though the actor playing Sam is not autistic in real life, many other actors playing supporting roles as well as some writers of the script are autistic and the series tries to depict what life is like for someone on the spectrum realistically and with humor. The series is fun and engaging to watch and (from my experience) helps to understand better what autism is about.

The fact that I'm quite a cinephile and I can't think of any other movies or TV series depicting autistic characters is a good indication that more of those should be made. While other art forms, such as literature, can also depict autism, visual representation is very important in this context, it's important to see how an autistic person expresses him/herself through both body language and facial expressions, also to hear their speech and not just imagine those things while reading. Videos can create a more objective representation.




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Spook Louw
Spook Louw3 months ago
I think this is a great point, media plays such a big part of what we think and the opinions we form, one of the best ways to remove a stigma about anything would be to normalize it by exposing us to it more.

The same would be true about Autism, a recurring term I've seen on this session, in my research and on Quora, is that most people who don't have personal experience with autism (i.e either themselves or a close relative) admit to just not knowing much about it. This is one of the reasons I'm trying to get more people with autism to participate in this conversation, but, as you mentioned, it is also indicative of our blind naivity.

One could argue that we don't receive adequate education on the topic, and perhaps that is a good point, schools could make sure to cover an irregularity that simply is not that rare. There's no reason we shouldn't be more informed about it, but the truth is, schools only account for a very tiny percentage of our education today. I know about politics in countries that I have never been to, I know about the personal affairs of people I have only seen on television screens, I know what colour the sand is on the beaches in Hawaii even though it's thousands of kilometers away from me, I know about so many things that I was never educated on, but I am exposed to daily by television and magazines and social media.

Why not use this amazing method of sharing information to increase our understanding of Autism (and many other subjects)?

Sensory deprivation for people with Autism

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Spook Louw
Spook Louw May 02, 2021
Seeing that sensory overload seems to be a consistent symptom when talking about autism, perhaps the same VR technology can then be used to help people with autism navigate situations where there might be too much stimulation.

"Sensory Isolation" has been experimented with for helping people with autism since the 1950s. But the idea I have resembles a mobile sensory deprivation tank more than the experiments they were working on back then.

If VR technology could be used to help turn down the volume of the senses, people with autism might be able to incorporate it into their lives to help make experiences like going to school or going to the mall a less overwhelming experience.

[1]https://psychotherapy.psychiatryonline.org/doi/abs/10.1176/appi.psychotherapy.1970.24.2.228?journalCode=apt

[2]https://www.oceanfloatrooms.com/autism-sensory-deprivation-tanks

Dr Grandin

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Spook Louw
Spook Louw May 11, 2021
I had the honour of presenting this idea to Dr Temple Grandin , the world-renowned animal behaviourist and autism spokesperson.
She pointed out how much autism can differ between people and how necessary it is to make sure that we cover the entire spectrum if we attempt something like this.

"I like the idea of using virtual reality to show what it is like to have sensory problems.  Sensory issues and problems with screening out background noise is highly variable between individuals.  I do not have any visual problems, but I do have problems with hearing conversation in a noisy restaurant.  Another person may have severe visual problems.  My sensory issues are a minor nuisance and for another person, they are really debilitating.  It is really important to show the wide range of sensory problems."

This is obviously something we have been trying to address properly, but we will definitely need people with personal experience's input to continue with this idea.

Perhaps we can think of a way to help people with autism articulate or demonstrate their different experiences so that we can have a database to work from.

[1]http://content.time.com/time/specials/packages/article/0,28804,1984685_1984949_1985222,00.html

[2]https://www.britannica.com/biography/Temple-Grandin

Exaggerated tautology

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Darko Savic
Darko Savic May 03, 2021
Tautology - the saying of the same thing multiple times in different words. Basically an inefficient use of language that makes the speaker appear foolish. A few examples:
  • "I went to see him personally".
  • "This is a new innovation"
  • hot water heater
  • "He made the hand-made scarf himself"
  • "There is frozen ice on the road"
  • "I saw it with my own eyes"


Prepare a few nuggets of exaggerated tautology, then drop them in conversations with neurotypical people. If they get triggered there's your opportunity to explain how a person with autism is often bothered by everyday tautology that others don't even notice.

Crucially important: re-word and defer to Autistic Self Advocacy Networks (ASAN), rather than autism-pathologising "charities" and their framing

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salemandreus
salemandreus May 15, 2021
A request for all writers/commenters to please ensure the terminology we are using is in accordance with Autism Self-Advocacy as the generally accepted terminology by autistic activist groups. Some of these amendments in framing include using identity-first language ie "Autistic people" as the phrasing "people with autism" implies autistic people can be separated from the autism, where the foundation of austic activism is an acceptance that in reality being autistic is part of who we are. Also to refer to the "autism spectrum" rather than using outdated and considered ableist terminology like "high functioning" or "extreme" autism or "Aspergers syndrome" (the last of which also has a really terrible origin) or "special needs". This is crucially important as the existing framing being used predominantly here is a harmful and outdated framing promoted by self-called "charities" which seek to pathologise autism and many of which seek to "cure" or "prevent" autism through eugenicist research. These are widely opposed by autistic activists for the harm they do, even in many cases considered to be hate groups, such as the infamous Autism Speaks (who use the blue puzzle piece logo for this purpose).
They happen to be actually partnered with NextForAutism, the "charity" Mark Rober was promoting in his #ColorTheSpectrum event, which is why the event was strongly opposed by the autistic community (by searching the hashtag you will probably find out how much backlash it incurred from autistic people.) Here is one of many reaction videos from autistic activists summarising why this event and Mark Rober's video are harmful to the autistic community.
Autism Speaks in particular, and charities which apply a curative model, have gained prominence through harmful misinformation advertising such as the former's "I am autism" advertisement (referenced also in the video linked below) . Unfortunately, very often media outlets defer to what these charities and the caregivers of some autistic people with particularly high care needs (problematically dubbed "low functioning") perceive of autism, not the experiences of actually autistic people, and in particular not acknowledging the experiences of autistic adults, which is another reason for the popularisation of the hashtags also using the hashtags #ActuallyAutistic and #AutismSelfAdvocacyNetwork or #ASAN as identifiers of autism self-advocacy.

When we acknowledge what these self-advocacy groups have been trying to promote all along it becomes apparent that it is not appropriate to refer to autistic people as "people with autism" any more than it would be appropriate to refer to say a black person as a "person with blackness" or a gay person as a "person with homosexuality". The Autism Spectrum is actually more like the colour spectrum of visible light rather than a single colour gradient of "functional level" being "more" or "less" autistic. This is one reason autistic people embrace the infinity rainbow as a sign of neurodiversity rather than the ableist symbolism of the puzzle piece promoted by Autism Speaks. Autistic people can have any combination of traits, hence it is a spectrum and no two autistic people are the same. Not all of us stim, require routines, struggle with "getting" sarcasm etc (and even then there are nuances), and being on the spectrum is about more than those exterior manifestations as they may be perceived by neurotypical people. Autistic self-advocacy focuses on accessibility towards and acceptance of autistic people in society, seeing inequality as the problem rather than pathologising autism itself. In order to be in line with actually serving the autistic community, activism has to be led by autistic people and amplify the voices of autistic people rather than self-branded "charities" or caregivers. More specifically to this context, it is essential to not defer to speculations and a neurotypical framing of the situation and needs, otherwise, like Mark Rober's event, it tends to do a lot of harm and be opposed by the the community it claims to serve. Activism which does not defer to the marginalised group ends up being just the empowered group deciding their fate, as the unfortunate history of treatment of neurodiverse people by "charity" and "medical care" organisations continues to show. Thus research itself should also defer to autistic self-advocacy networks, as accessibility, and even the field of psychology, still unfortunately have a long way to go in terms of catching up to autistic activism.
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Dragan Otasevic
Dragan Otasevic4 months ago
salemandreus I can imagine a few types of people that would have a difficult time always finding/using "politically correct" terminology:
- non-native English speakers
- people on the autism spectrum (blunt directness)
- field outsiders who have no idea that there even is a difference in terminology

I'm pretty sure Mark Rober in his wildest dreams didn't want or expect to offend anyone. He just didn't account and better prepare for the cancel culture.

Not to take this session too far off-topic, here's how I see it:
- the main problem is that neurotypical kids (majority) fail to understand the difference
- they inflict psychological scars for life on a lone autistic kid among them

The aim of this session is to figure out ways of making neurotypical kids understand how/why people on the spectrum differ. A problem understood is a problem half-solved.
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salemandreus
salemandreus4 months ago
Dragan Otasevic Yes indeed, the autistic community are well aware that too many people have heard the hate groups' narrative and framing of the situation, which is exactly what I am saying.

The only way to stop the perpetuation of abuse and misrepresentation of autistic people is to amplify their voices and finally support the endeavours autistic activists have been trying to push for years instead of the hate group "charities".

And also yes, exactly, understanding the problem is halfway to solving it which is again exactly why we need to defer to what autism self advocacy groups have been saying all this time about their own oppression.

Also I feel I should correct one misnomer here: the problem goes beyond children being insensitive, it is the still legalised practices of "charities" like the one Mark Rober promoted - unfortunately it's long-running, normalised and legalised systemic abuse of autistic people by adults, even in the name of outdated medical science, such as the harmful practice of ABA techniques on autistic children.

It's unfortunate that Mark Rober did not do his research via autism advocacy channels and unwittingly became a mouthpiece for a known (to autistic people) hate group, I am sure he intended the best for his child just like most parents who are fearmongered and misinformed by these groups.

The question is how we shift away from the model these hate groups present, which is still the default approach to how autistic people are treated often even medically, to the self advocacy autistic activists have been campaigning for all these decades.

Obviously the only reasonable and ethical way to overcome marginalisation is in supporting and amplifying the marginalised group advocating for themselves, and the community have already made it clear that the current outdated terminology and practices cause harm. Hence how do we ensure the next event actually DOES represent and get supported and actually led by autistic people?

So the next logical step forward is to know the actual market: what do autistic people WANT to be known to neurotypical people in the first place? What have they already been saying? What Initiatives have they been trying to push? What is the purpose the VR tech

Hence my redirecting to the self-advocacy groups themselves rather than the hate groups which is there lense most people and society by default has been taught to view autism through.

Exactly as you say: many people have no idea that the current default societal narrative of autism is through hate groups, and therein lies the whole problem - that the current requirements still need to be defined by the target "client" (autistic people) as it were - as this is effectively to be a PSA/educational campaign on their behalf.

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General comments

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Darko Savic
Darko Savic5 months ago
In this video https://youtu.be/ybPgmjTRvMo?t=199 from 3:19 onwards, Mark Rober tries to show what sensory overload feels like
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Spook Louw
Spook Louw5 months ago
By the way, auti-sim.com is an available domain name, which I think might be a great start for a company that produces the abovementioned product.