Survey about behavioral or developmental disorders for a study

[JoSchi]

Hello there!


As some of you know (Working on an app to support ASD) I'm currently looking to build something, together with my partner, to help people with ASD and other behavioral or developmental disorders.
I faced a lot of challenges after my diagnosis and I'm sometimes stuck because the support is not fast or lacking a lot of things.
To get an idea what is needed and will help more people, we need to identify them and this is only possible through you. I know that some have doubts, but this is meant to help people. So if you have 10-15min and are willing to help us, you can answer this questions:


https://forms.gle/xxCUNfepa9aMH1rr6

It's a link to google forms, no virus or ads and it's anonymous - I promise.
I will not see who posted answers, I just see the answers themselves, without a name or anything else.

 

[Levitator]

I always figured my ideal "support group" was actually some recreational group of nerds, like a card game or RPG group, but I haven't even had success with that lately. Way back in the day, my shared passion was LAN parties, but they've gone away due to adoption of pervasive broadband Internet access. I need to actively cultivate a new shared interest for that to work. I like the crowd well enough, though.

However, after dating this certain awesome girl, it has gained an appeal to look for people whom I perceive to be in worse shape than me because it's fun to explore others' differences, and when you spend time supporting them, it's an adventure of discovery on both sides. I never really saw myself as having that impetus before, but I've had such a trash life, it's instilled in me a new depth of compassion and sympathy. It's probably not a coincidence that Jesus' life was all about focusing on people you perceive as disabled or crippled, and I keep saying; it's not just charity, because they are the ones who have hidden spiritual treasure inside.

If you have unusual deficits, I'd love to hear about them, what it's like, and what people can do to help.

 

[JoSchi]

Thanks for your reply, Levitator!

Well..I like online games from time to time. I play them with friends, as it's much easier to talk like this.
And you don't have to focus on talking every 30 seconds

I'm not sure if I got your dating part here right. Why are you looking for people that are in worse shape than you are?
My deficits? It's social interactions. I'm quite good at words when I want to "pitch" something or trust a person. But if I don't, it's super hard for me sometimes. I can have hours where I don't want to talk at work f.ex. which doesn't work as I'm leading a team. Not the best surrounding for me, but it's a super safe job. I don't like doing groceries, I feel like squeezed when going there. Because of the lights, noises and people. There are more things, but this is quite a challenge every week or day.

 

[AuroraBorealis]

Hi Joel, I already replied to your survey, but after melting down at a public place 2 days ago, I got another idea. How about an app that shows sensory-friendly rooms and surroundings in proximity? Where I live (you know where that is) there is nothing of the sort. I don't think there could even be found any "real" sensory-friendly rooms, at least I haven't found any through online research. That's a general problem, not yours.
Edit: And also at other places, I have never seen any display of sensory-friendly rooms, either, so I guess it's not just a problem in my country.
But a very useful alternative might be to collect calmer places around, like parks with no cars close, or a church, or even public bathrooms that are free. This might be especially useful for autistic people who aren't very familiar with the surroundings. So, if you're approaching a meltdown or maybe even already are in one, you can look up where a more or less calm, safe space in your surroundings might be to retreat to. If you find any "real" sensory-friendly rooms (accessible for adults, too) to put into the app, the better.

 

[AuAL]

Just a data point. Some shopping malls in my area have started advertising regular “quiet times” each week to assist people with sensory support needs.

 

[JoSchi]

Hi Joel, I already replied to your survey, but after melting down at a public place 2 days ago, I got another idea. How about an app that shows sensory-friendly rooms and surroundings in proximity? Where I live (you know where that is) there is nothing of the sort. I don't think there could even be found any "real" sensory-friendly rooms, at least I haven't found any through online research. That's a general problem, not yours.
Edit: And also at other places, I have never seen any display of sensory-friendly rooms, either, so I guess it's not just a problem in my country.
But a very useful alternative might be to collect calmer places around, like parks with no cars close, or a church, or even public bathrooms that are free. This might be especially useful for autistic people who aren't very familiar with the surroundings. So, if you're approaching a meltdown or maybe even already are in one, you can look up where a more or less calm, safe space in your surroundings might be to retreat to. If you find any "real" sensory-friendly rooms (accessible for adults, too) to put into the app, the better.

Hey Aurora,

First thanks for your always helpful answers!
I was thinking about this, as a feature. Some kind of map where you could look for doctors, calm places, supermarkets, etc, that are experienced with autistic people, people with ADHD , etc.
For now, what I'm doing is gathering informations about everyday life and where problems are. Than check how important a problem is and how people are trying to solve it now. I'm currently reaching people that are more or less affected by ASD or ADHD and speaking directly to them. I had 10 meetings so far and they were super helpful. Had a meeting with a company today, that were in this sector too and at the end failed, due to problems they didn't think about it. So for now, it's about gathering informations for me, locate the real problems. But your hint is useful, as it could be a feature in this plateform/app.

If anyone of you, has time at some point and is willing to speak with me (Teams, Skype, video, no video, whatever) directly and tell me about their daily life, struggles that can occur, etc - feel free to contact me via PM. I'm not collecting your credit card info, stealing your identity or whatever, but it's super helpful to develop something.

And thanks for all your answers until now, some were super, super helpful!

Regards,

Joel

 

[-Matt-]

I completed your survey.

As one who is newly accepting of my old diagnoses: After 39 years of masking, it would be very helpful to have an app that prompts for input and helps build an autistic profile for you over time. It's hard to mentally collect data points, and it takes me a long time to understand what my traits are, let alone what to do about them.

 

[JoSchi]

I completed your survey.

As one who is newly accepting of my old diagnoses: After 39 years of masking, it would be very helpful to have an app that prompts for input and helps build an autistic profile for you over time. It's hard to mentally collect data points, and it takes me a long time to understand what my traits are, let alone what to do about them.

Hey Matt, first thank you for helping us!
I'm not sure if I got your idea right? What do you mean with autistic profile?
We're discussing an AI option to learn from a person and to warn them that some things could lead to a Meltdown, but I guess it's not the same?

Regards,

Joel

 

[-Matt-]

Hey Matt, first thank you for helping us!
I'm not sure if I got your idea right? What do you mean with autistic profile?
We're discussing an AI option to learn from a person and to warn them that some things could lead to a Meltdown, but I guess it's not the same?

Regards,

Joel

Joel,

Good question, and I was kind of vague. I would find it useful to track events and symptoms (mental and physical), which when combined with meltdowns/shutdowns or other significant periods of distress, would help one discover the causes. I can broadly say that "I don't like public places", but it's difficult for me to figure out that a grocery shopping trip is fine, but a business meeting in a specific large room causes significantly more distress.

EDIT: I just re-read your response. Yes, a system to assist one in predicting and preventing meltdowns is exactly what I was trying to communicate.

 

[JoSchi]

We're discussing this, yes. I don't know if it will be possible in every way, but it's an option. Like a calendar/planner, connected to a stresslevel, where AI can learn from how the person feels. But therefore it requires this person to tell the AI how she's feeling after every meeting. Quite difficult. The main purpose should be another one, we already have in head, but as a feature we're discussing this too.