AASPIRE, the Healthcare Toolkit, and Why You Should Participate.

Hey everyone, I wanted to share about the AASPIRE Healthcare Tool Kit. This will be a pretty targeted post, but I think it’s pretty important.

AASPIRE is the Academic Autistic Spectrum Partnership In Research and Education, and they use Community Based Participatory Research (CBPR or PAR) to bring Autistics and academics together for research benefiting Autistic adults. This means that they believe that the Autistic Community needs to be equal partners to the research about them with the academics. Additionally they focus on quality of life issues for Autistic adults, and prioritize the concerns of the Autistic community in selecting what research to do and how to do it. Basically, they are working on a model that should be standard but sadly isn’t when it comes to research about us.

Over the past couple of years AASPIRE has been looking at healthcare access for Autistic adults. The first study that they did looked at our healthcare experiences, comparing and contrasting them to the results of not only non-disabled people but also allistics (non-autistics) with disabilities. As some of you might expect, the results were distressing- Autistics regularly have worse experiences and access to care, including preventative care, and more Emergency visits than the other populations surveyed.  Based on this information AASPIRE researchers publish a paper called “Comparison of Healthcare Experiences in Autistic and Non-Autistic Adults: A Cross-Sectional Online Survey Facilitated by an Academic-Community Partnership” in the Journal of General Internal Medicine. There was also a follow up with 30 Autistic adults for some more in depth questions about access to care, accommodations, and other details. They have a page on their site with more details about this and links to several formats of the above mentioned paper.

From there, AASPIRE started on developing a toolkit around healthcare for Autistic adults and our supporters to use. This study is currently still running in phase 3- more on that in a minute- but the goal is to develop a toolkit that will help us get better healthcare- have a better understanding of our own care, have more successful visits, and better access to care. Part of this involved generating a customized report that they or you could send to your General Practitioner/Primary Care Provider to help them understand what is needed to make sure you are getting the healthcare that all of us deserve. It ranges from access information to information on the sort of support you need to follow up on your aftercare.

As you might guess from my interest, I’ve participated in these studies. I love working with researchers who share my ideas about what research about us should look like, and quite frankly I believe that this particular line of research can help a lot of people. With the Healthcare Toolkit, though, it also provided me with a tool that may care team is actually using. When I gave copies of my report to my MH case manager (who used to be a supports coordinator in the ID/DD system I believe she said), she told me that she wished a lot of her clients had or had had things like it. I had her forward my report to all of my specialists which as I have plenty of health issues is a good number of doctors, some of whom I see a lot less often than others. So far, it’s gone ok.

I’d like to encourage people to participate- your feedback helps them figure out how tools like this could be better, and it provides you with a decent report about what sort of supports and accommodations you need to get the most out of your healthcare visits. Participating can have an impact on your healthcare visits depending on your doctors and who you send it to. It can also help the people who support you in your healthcare, if you need that sort of support, support you. I have my mother support me at a lot of the more complicated healthcare visits I have, and to my first time at a new doctor, so I think the fact that I need that kind of support on there (I think- I did it in late October) but that I am still capable of understanding my care helped. For example my case manager now asks if I need her to come with me any time she schedules an appointment for a new doctor. At my new PT’s they understood right away, either because of a copy of the report OR because of the information that my case manager conveyed from it.

If you are interested in participating, I encourage you to check out the information they have available. You can participate if you are either an Autistic Adult of some sort or if you are a major support person for an Autistic Adult. Make sure you fill out the survey after- you DON’T have to actually visit your doctor to take the survey afterwards. I thought so at first but I was informed by one of the lovely researchers that I didn’t need to have filled it out to take it. In return for your participating, you can get either a $30 Amazon gift card or check after you fill out the above mentioned survey.  I really appreciate that compensation even though I’m someone who participates in these things both because I believe in the goals of this particular research and because participating in research- be it for a scientific study or consumer ones- is a hobby of mine. I know others of you don’t share my hobbies, but between the compensation and the fact that you are getting a free tool to use about your healthcare is, I think, something that could appeal to people who don’t have the same hobbies.

I really believe in this project and I really want it to succeed, and the more people who participate the more significant the information that they get will be.

How to Add a Caption File to A Youtube Video

When interacting with people about building access, there are a couple things that I get a lot of push back on. One of them is creating additional documents giving information in accessible language without removing information. The other, and subject of this post, is captions.

Often, the response when I ask for something to be captioned is that it’s difficult, complicated, or would require removing and re-uploading the video file itself. Alternatively, they say that buying a program to create captions, let alone having someone do it, is cost prohibitive. And maybe they would have a point on cost- if we weren’t talking about putting a file on Youtube. Additionally, half the time I am providing them with the caption file. So I explain that no, it’s very easy, and I type out the steps for them to add a provided caption file to their video. I do this often enough that it makes sense to just create a how to post here that I can link people to instead of typing it again and again.

Youtube makes it very simple to add captions to your videos if you have a file for it. Below are the steps involved in adding a caption file to a video you manage. Please note that Automatic Captions are usually almost as or just as bad as no captions. More on that later.

  1. You have to be logged in to the account that the video is on. This is important- if you aren’t, you won’t have access to the video manager or the information edit area of the video.
  2. Go to the Youtube home page. From here we are going to need to get to the video manager, and there are two easy ways to do this:
    1. Beside the “Upload” Button immediately to the right of the search bar is a down arrow. If you click on it, there will be a little menu. From that menu, click “Video Manager.”
    2. The other way: In the upper right hand corner is your user icon. Beside it is a little down arrow. If you click on it, a section of the page expands showing some of your history and some account options. Under “Youtube” is a list of Youtube related account options. One of these is the Video Manager. Click on that.
  3. Now you should be in the video manager. Your uploaded videos should be listed- a screen grab, some video information, and an edit button. Scroll down to the entry for the video the captions are for. Next to that entry’s Edit button is a little down arrow. If you click on it, it will have a number of options for areas of the video to edit or adjust. Click on “Captions”
  4. You should be taken to the Captions list, or where that list would be. You might already have something called “Automatic captions” on that list. Automatic captions are generally as bad as no captions. Ignore that line. Above it is a big blue button that reads “+ Add Captions.” Click on it. From the menu that drops down click “Upload a file.”
  5. You’ll have some options on the new side bar that comes up. This is basically the details for the file you will be uploading, and you need to set them. Under “Track Language” select the language that the captions are in. (If I sent you the caption file, it’s probably English unless otherwise specified.) You have the option of adding your own track name if you want (by clicking “+ Add track name”) but that is an optional step.
  6. Under “Caption or Transcript File” is an “Upload” button. Click on it. A dialogue box will pop up that will allow you to locate and select the caption file. I usually prefer to use a “.SRT” file myself, but Youtube also allows for .sbv, .sub, .mpsub, .lrc, and .cap files. Once your file is selected, click “Open.”
  7. TA DA!!! You have successfully uploaded a caption file to your Youtube video!

If you only have a transcript, save it in a .txt file with a space between each line of text. Youtube can try to figure out the timing on the lines, but keep in mind that Youtube is just running it through a computer and won’t catch things like undetected errors or that the timing the computer selects is too fast for most viewers.

If you like, though, you can use a website called Amara to subtitle the video yourself, or to edit your transcript to add timing. Amara used to be known as Universal Subtitles. It is a simple to use and easy to learn tool, doesn’t require you to download any new programs onto your computer because it’s completely in browser, and is free. That’s right, free captions if you can use it yourself or have a friend or fan of your channel do it for you for free. (Or if you have an intern or work study student working under you who needs something to do anyways.) I put together a video showing how to use it, but Amara has a lot of videos and FAQs that make learning their system easy. If you have your Amara account linked to your Youtube account, it will automatically export the the captions you make for your videos so that you don’t have to  go through the above steps.

I recognize that not everyone has the same learning style, so I created “How to Add a Caption File to A Youtube Video” guides in multiple formats:

There will also be an audio recording of this blog post which I’ll record and put up on Soundcloud as soon as I hit publish. (HINT: This is it!)

On Youtube’s automatic captions: they can be pretty horrible. Yes, they slowly get better, but that doesn’t help any of us now. For a funny (and musical!) example of how messed up they can be, I suggest watching Rhett & Link’s Taylor Swift Caption Fail video. Using some of the frankly bizarre things that Youtube’s autocaptioning feature thought were the lyrics to actual Taylor Swift songs, Rhett & Link put together a mash-up song. It’s both illustrative of my point, and extremely funny.

It is my hope that I won’t be the only person who will find these guides useful to have on hand.  I know I’m not the only one who is frustrated about how few people think to caption their Youtube videos, and I know a few people who will benefit from having it explained to them again.

Because access is for everyone, not just English speakers, I’d love to hear from you if you’d like to translate any of the above into a language you are fluent in. You can also leave a comment if you have any questions or suggestions. If you are a fellow captions user, I’d love to hear from you as well- I use them because of auditory processing issues myself.

In short:

Caption thy videos . . . So Say We All