Component 1. Psychological assessment

So, now, I'm going to try to break down these components, from my perspective. Basically, everything in Component 1 is designed to help you document what's happening, just from a purely prescriptive point of view, so you can share it with doctors. 1a. Basically, if you think you might be experiencing autistic catatonia, you might want to download fill out a survey quesionnaire called the ACE-S, or "Autism Catatonia Evaluation," which Dr. Shah developed, and which is available here: 
https://related-materials.s3.amazonaws.com/prod/9781785922497%20-%20Shah%20-%20Catatonia,%20shutdown%20in%20autism%20DLC.pdf . 
(There's another ACE questionnaire which doesn't have anything to do with autism or catatonia, so make sure you have the right one). This questionnaire will help you to describe what you're experiencing as fully as possible. You should also go out of your way to include any other information or documentation that you might have, showing what has been happened to you: records of doctors' visits, hospital visits, paperwork for work or school, etc. (This is Part 1a. of Doctor Shah's list--Profile of catatonia, shutdown, and breakdown).

1b. Also, it's possible that you're going to have to seek some care from a doctor or specialist, at some point, who doesn't already know you. So it's probably a good idea to pull together as much info as you can about what your experience of autism is normally like. For instance, do you need any tech or assistance to go about your day, and if so, what? What are your stims usually like? Do you have any issues with sensory stimulation: if so, what? What are your special interests? What are your meltdowns like, and what are your meltdown triggers? What kind of preferences do you have, when it comes to your daily environment?

You'll also want to pull together any other documentation that you have about your symptoms: both your catatonic symptoms and also just your general symptoms of autism. You might have this information already written down somewhere in a report or in some part of your medical history, but if not, it might be worthwhile to write it down. For instance, what kinds of stims do you have? How verbal are you? Part of what you are trying to do here, in pulling all this paperwork together, is to help a doctor or psychologist see the difference between your "normal" autism and your burned out/catatonic autism. (This is part 1b. of Dr. Shah's list--Profile of individual's autism and vulnerability.)

1c. Now that you've done your best to describe what has been happening to you, by showing the difference between your baseline state and your burned out state, you may want to start thinking about how or why it happened to you: i.e., how did you get so burned out? Again, the answer might seem obvious to you, but the point is to think it through enough that you can communicate it easily with other people. Dr. Shah's approach asks you to think about this question from a lot of different angles. This first angle is pretty simple: ask the question, "In what ways is my environment a bad fit for me?" Consider as many things as you can. Are you just staying home all the time, without anything to do? If so, do you think the lack of structure is a bad idea for you? Do you have to deal with loud noises or big groups on a regular basis? Are you feeling hurt, bulled, or used in some way, but not feeling free to talk to your friends and family about it? Have you recently gone through some major life transition? Dr. Shah's book has a bunch of example questions like these but you can probably also figure out a lot of possible questions/answers on your one. (This is 1c. of Dr. Shah's list--Ecological and milieu factors.)

1d. As you are compiling this information, formally or informally, you want to be sharing it with your doctors, with any caretakers you have (family, care workers, partners, etc.), and, ideally, with autism specialists, as soon as you are able to find them. The best is to find a doctor/psychologist who already knows about autistic catatonia. But the second best is to find a doctor/psychologist who is willing to learn new things (by reading or consultation). The worst is a doctor who doesn't know anything about the condition and also seems disinterested in learning from you or taking you seriously. Fire that doctor.

Anyway, once you have pulled all this info together and are talking to a doctor you trust, it's time to start pulling the pieces together to try to figure out what happened and how to take care of you moving forward. This process will probably take a bunch of time, but you should start as soon as possible, and you should give your doctors/psychologists as much info as you can, as soon as you can. (This is 1d. of Dr. Shah's list--Interpretation and formulation.) Really, you need to find a specialist in autistic catatonia, but that can take some time, so don't wait to get started.

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