MIT LaunchX Autism Meltdown Research

[Cognality]

Survey: forms.gle/p8hszjFwfkebeGKG8

We are a team of students at the MIT LaunchX program and are creating a company that we believe would be extremely beneficial to the Autism Spectrum Disorder community. Anyone that believes they could provide crucial insight on this topic based on their personal experience with an autistic child, please take a moment to fill out this survey.

--The Cognality Team

 

[Tom]

I'd like to help, but went into a etymological meltdown at 'Cognality'.

 

[inkfingers]

I just took the survey. Are you trying to use VR to help Autistic people?

 

[Pinkie B]

I think you should try and make friends here first before mining us for your business data.

 

[Crossbreed]

I had melt-downs more when I was younger. I had shut-downs a little longer.

For me, they seemed to be triggered by two possible sources.

1. Sensory overload. I would lose track of whatever I was trying to follow and it would evoke a panic or shut-down response. This did not happen if all of the inputs were in agreement with each other, such as a 3D movie in stereo or a musical group playing together.
2. Cognitive dissonance. When a situation made radically different demands than I anticipated in my internal/imaginary model of it. (In all fairness my model could have been wrong at any given time, though it usually wasn't.) Now, I have better-informed internal models, and I don't hold to them so tightly. A radically different reality (when it happens) is still frustrating, but instead of freaking out, I launch into engineering/trouble-shooting mode, trying to locate the disconnect. Unrecognized, deliberate deception (on the part of another) could evoke this type of response, too.

Also, bear in mind, there is a big difference between autistics who do or don't have cognitive deficits, in spite of whatever other problems they might have. (It is a separable component comparable to a TBI.)

 

[Isadoorian]

One thing the community will ask of you is to please share your results afterwards.

Also, to be honest, I fail to see how Virtual Reality will help with meltdowns since they're physical and can be triggered by frustration. Perhaps you could explain how you believe it would?

I don't have meltdowns so I'm ineligible for this survey.

 

[Autistamatic]

I would gladly participate if I had a better idea of the premise of your business idea and the tech/methods behind it. If I approve then I'll fill in your form. Plenty of people have offered to "benefit" autistic people and then done the opposite.
Using the word "disorder" in your request is very telling in itself.
Asking people to blindly offer personal information without context is not exactly ethical.

 

[shysnail]

I agree with the other posters. If you could give more context about who you are and the position of your research, I'd be more comfortable being involved. The autistic community get tested on like guinea pigs a lot, and it's not often coming from a place with genuine insight into who we are or what we actually want to see happen for us.

Do prove me wrong, but your use of language "Autistic Spectrum Disorder community" and the the first question in the survey "Adult with autism" as opposed to "Autistic adult" (which a lot of the autistic community prefer) doesn't make me immediately feel this research is coming from a place of understanding of the autistic community.

Please don't just ignore what people are saying here, but try and engage with autistic people beyond just testing on us.

 

[Isadoorian]

try and engage with autistic people beyond just testing on us.

We get plenty of Surveys/Researchers that come here to seek out Autistics to help fill out their stuff; many tend to not be so great and many are borderline to straight up offensive/ignorant (as in little to no research done about how Autism works or what it is)

 

[Nitro]

Survey: forms.gle/p8hszjFwfkebeGKG8

We are a team of students at the MIT LaunchX program and are creating a company that we believe would be extremely beneficial to the Autism Spectrum Disorder community. Anyone that believes they could provide crucial insight on this topic based on their personal experience with an autistic child, please take a moment to fill out this survey.

--The Cognality Team

It would be acceptable here if you could offer us a few more credentials before asking our membership to submit information to your team and provide us with the results of your study.

 

[Cognality]

I just took the survey. Are you trying to use VR to help Autistic people?

As of now, we are only trying to gain information about you and the communitie’s needs. We are trying to listen and understand your experiences.

 

[Solphire]

VR would be terrible for a meltdown. Meltdowns are intense enough emotionally, along with all the information overload. The last thing I would want is a bulky, tight, uncomfortable, painful, VR unit stuck to my face and head. And even if I was not so touch sensitive, I would not even have the wherewithal to remember to try to put it on in that state.

 

[Cognality]

I think you should try and make friends here first before mining us for your business data.

We sincerely apologize if our post was insensitive. Our goal with this survey is not to mine business data, but to hear from the community about their needs and experiences. If you want to talk to us more feel free to begin a conversation with us directly.

 

[Cognality]

I had melt-downs more when I was younger. I had shut-downs a little longer.

For me, they seemed to be triggered by two possible sources.

1. Sensory overload. I would lose track of whatever I was trying to follow and it would evoke a panic or shut-down response. This did not happen if all of the inputs were in agreement with each other, such as a 3D movie in stereo or a musical group playing together.
2. Cognitive dissonance. When a situation made radically different demands than I anticipated in my internal/imaginary model of it. (In all fairness my model could have been wrong at any given time, though it usually wasn't.) Now, I have better-informed internal models, and I don't hold to them so tightly. A radically different reality (when it happens) is still frustrating, but instead of freaking out, I launch into engineering/trouble-shooting mode, trying to locate the disconnect. Unrecognized, deliberate deception (on the part of another) could foment this type of response, too.

Also, bear in mind, there is a big difference between autistics who do or don't have cognitive deficits, in spite of whatever other problems they might have. (It is a separable component comparable to a TBI.)

Thank you for you fantastic feedback! We would love to talk with you more. Please see the conversation we started with you for more information.

 

[Pinkie B]

What if you started by reading some of our public threads and participating there? People here are happy to write long, detailed treatises on their experiences at only the slightest hint of interest.

...it's one of the reasons that I like it here.

 

[Catana]

At least they're honest that this is about launching a business -- in other words, using autistics to make money.

 

[Cognality]

One thing the community will ask of you is to please share your results afterwards.

Also, to be honest, I fail to see how Virtual Reality will help with meltdowns since they're physical and can be triggered by frustration. Perhaps you could explain how you believe it would?

I don't have meltdowns so I'm ineligible for this survey.

We will release the results of the survey on this thread when we close the survey. We are not thinking of any solutions right now we just want to gain insight into the community.

 

[Cognality]

I would gladly participate if I had a better idea of the premise of your business idea and the tech/methods behind it. If I approve then I'll fill in your form. Plenty of people have offered to "benefit" autistic people and then done the opposite.
Using the word "disorder" in your request is very telling in itself.
Asking people to blindly offer personal information without context is not exactly ethical.

We our sorry if we offended any member of this community in any way. We were are trying to use official medical terminology, but if you have any suggestions in terms of word choice let us know.

We are aware of other false claims to help the autistic community. As of now, we are not offering a solution or even have a solution in mind. We are merely trying to gain insight into the community’s experiences.

 

[Cognality]

I agree with the other posters. If you could give more context about who you are and the position of your research, I'd be more comfortable being involved. The autistic community get tested on like guinea pigs a lot, and it's not often coming from a place with genuine insight into who we are or what we actually want to see happen for us.

Do prove me wrong, but your use of language "Autistic Spectrum Disorder community" and the the first question in the survey "Adult with autism" as opposed to "Autistic adult" (which a lot of the autistic community prefer) doesn't make me immediately feel this research is coming from a place of understanding of the autistic community.

Please don't just ignore what people are saying here, but try and engage with autistic people beyond just testing on us.

We deeply apologize if we offended any member of this community. We took your suggestion and changed our terminology in the first question. We would appreciate any other feedback that you can provide to us.

Regarding providing broader context, while we would love to provide you with as much information as we can however at this point we are merely trying to gain insight into your experiences. We currently do not have a product or item in mind.

Again please let us know if you have any other suggestions.

 

[Cognality]

We get plenty of Surveys/Researchers that come here to seek out Autistics to help fill out their stuff; many tend to not be so great and many are borderline to straight up offensive/ignorant (as in little to no research done about how Autism works or what it is)

Thank you for your post. We’ve been replying and reading every post on this thread and the feeling of being “experimented on” seems to be a common theme. We deeply apologize if our survey made any member of this community feel that way.

We are trying our best to not be ignorant about autism. We are also interviewing autism experts and medical professionals in addition to this community. If you see any ways to make our survey more inviting and less offensive or provide us insight into anything regarding autism please connect with us on the private conversation invite we sent.