Burnout and Catatonia

Here is a map of assessment providers , if anyone is looking for an assessment provider in their area. I went through all these listings and double checked them for accuracy about a year ago, so I hope that it's reasonably up-to-date, although I'm sure some entries have shifted a bit. (Note: this map is not a map of clinicians specializing in catatonia; it is only a map of autism assessment providers.) If you have had a positive experience with any assessment providers who are not on this list, please feel free to add it to the map or let me know and I will add it to the map. 

Recently, I came across a really wonderful website on living and thriving as a disabled person, called How to Get On . It offers very practical advice about getting disability, living on disability, how to get on other forms of support, how to handle being homebound, and dozens of other useful topics. What most struck me, however, was its advice on hiring a home aide, which seems to me to be practical, grounded, and wise. Most of its blog posts on the subject are organized into a guide called  The Self-Advocate’s Guide to Disability Home Aides . I am the front end of this process myself, so I can't say I've tried everything on the website already, but it tells many individual stories and offers many wonderful tips. Highly recommend for those who may be hiring a home aide (especially if for the first time). I found another very helpful article at ADDitudeMag, a resource for those with ADD, on finding and using a virtual assistant. Some of its tips for using a virtual assistant ...

10. In Dr. Shah's book, this component is called "reducing decision making." I want to focus on this advice as I understand it. She writes,  "The ability to make decisions and choose between options seems to get worse in many autistic individuals when they develop catatonia. It is helpful and actually beneficial to the individual if other people make the decisions on their behalf. The dilemma of making a choice or a decision seems to cause stress and anxiety and can increase shutdown and freezing. Reducing or removing choice goes against the principles of humanistic, positive support and care providing so understandably, carers and professionals feel unsure and uncomfortable applying this recommendation. However, this becomes easier when they understand the reasons and are reassured that it will help the individual and that they can gradually increase choices when they make progress. A gradual approach of limited options can be introduced and progressed according to ...

9. In Dr. Shah's book, this component is called "activity and stimulation therapy." As always--you should buy and consult the book. As a representative sample, I will quote an account from a family member: who was supporting an autistic son with catatonia. "My son has had various therapies such as cognitive behavior therapy, solution focused therapy and exposure techniques and counselling. None of these have had any benefits and have often caused more harm than good. By far the most powerful 'therapy' for him has always been being involved in enjoyable activities, for example, lunch out, cream teas, cinema, walks in the woods, bowling, voluntary work with animals, etc." Dr. Shah elaborates on this account as follows: "It is all too common and easy for the individual's activities to reduce so that gradually their activity level and quality of life drop significantly. Many people with catatonia-related breakdown start spending gradually longer tim...

8. In Dr. Shah's book, this component is called "Implementing immediate strategies of support," and it has three sub-components (a. support, assistance, and help; b. prompting, cognitive refocusing [distraction], and other activities; c. one-to-one support.)" As before, the advice in it is really for helpers and carers, not for autistic people themselves. So I am first going to introduce Dr. Shah's framing of this step and then introduce an idea I found on an ADD blog the other day, which gets at a similar idea from a different direction. First of all: Dr. Shah's book talks a lot about something called "prompting," which is very important to recovery, but also a little bit difficult to visualize or imagine at first. "Prompting" is, above all, a strategy for someone else to use if you get stuck or frozen. It means that someone should very very very gently remind you of what you were about to do, or somehow, very very lightly, get your atten...

I want to acknowledge upfront that this part of the advice is really really hard for some people because it assumes that you have access to someone who can take care of you, whether that's home staff or a family member or a friend. Obviously many, many of us are not in that boat. I want to keep thinking about how to handle burnout if you're on your own, but for now I am focusing on recapping Dr. Shah's advice to the best of my ability, so I am going to talk about what to do if you have help. Dr. Shah writes, "Often, providing one-on-one support from a small group of consistent people can provide security, stability, predictability, and consistency and enable the individual to start recovering while other changes are being planned and implemented." On the one hand, to autistic people, this advice can seem incredibly obvious, and also impossible. (I will talk about the impossibility later.) I do want to point out one way in which it's not obvious, however. If yo...

6. Dr Shah points out that it's really critical to catch catatonia early, if possible, and to keep watching out for potential signs of regression. It's important to remember that catatonia-related breakdown is usually gradual and starts "mildly," to use her word. Here are some early warning signs that someone should be assessed for catatonic breakdown: * "slowness--this can apply to movements or actions or speech" * "having brief 'freezing' or 'shutdown' episodes" * "decline in engagement and interest" * "deterioration in any aspect of functioning or skills" * "an increase in passivity" * "becoming more withdrawn and less communicative" I am getting tired, so I am paraphrasing less and quoting a bit more, but I did want to reframe. Speaking personally, as an autistic person--if I was at risk of a medical emergency every time I dealt with one of the symptoms above, I would never be out of the E...

5. Here again, the advice in Dr. Shah's book about meds is really for doctors, and you should give your doctors the book, but there are some basic take-aways. Ativan, under close supervision, is often really helpful for catatonia, and as a matter of fact, it can even help doctors diagnose catatonia, because it tends to work differently on catatonic and non-catatonic people. (If your Ativan is all of a sudden making you feel more lucid and awake and capable of fluid movement/normal speech, whereas it used to make you feel sleepy...that's one possible sign that your severe burnout might actually be catatonic.) On the other hand, anti-psychotics can be really counterproductive for catatonia; they are usually a Bad Idea. (Tl;dr: if you think you might have/likely have autistic catatonia or severe burnout, don't let your doctor put you on something like Abilify right away. Confirm that they aren't putting you on anti-psychotics until you've been assessed for autistic cat...

4. In her book, Dr. Shah spells out more advice for how carers should educate themselves about the condition of autistic catatonia. I would suggest simply that you give your doctor or psychologist a copy of Dr. Shah's book, along with any other articles that you have personally found helpful, and that if need be you keep shopping around until you find physicians who are willing to learn (not that they will give you the diagnosis you are shopping for--just that, if they don't know anything about autistic catatonia, they will try to refer you, and find out as much as they can in the meantime). As above--I am not going to summarize all of Dr. Shah's advice.

3. As you are pulling all of this information together and performing all of these self-inventories, and reading around about autistic catatonia, you are likely going to come face-to-face with one of the most depressing realities of autistic women's lives: the likelihood of misdiagnosis. You might have been misdiagnosed earlier in your life, if you were one of the many women who were initially diagnosed with GAD or MDD or anorexia or BPD (or...or...or...) instead of autism. You will have to be just as proactive about avoiding misdiagnosis, now. I am not going to summarize all this diagnostic advice here because it's not really advice for DIYers. The best thing to do, I have found, is to find doctors who know what they are talking about and who will read Dr. Shah's work, if they don't know it already, and other work about autistic catatonia. Specialists in autistic catatonia are often so full up that they aren't taking new patients, but they are sometimes willing to ...

This component of Dr. Shah's plan is designed to keep helping you (and your carers) figure out exactly why you are dealing with such heavy burnout/catatonia. A different chapter in Dr. Shah's book, Chapter 5, gives some good lists of possible causes. Reading these lists, you might feel like they are pretty obvious--the experiences they describe can sound like just another Tuesday for an autistic person--but remember that part of the goal of some of this stuff is to help you communicate with everybody around you. Here are some of the potential psychological causes of catatonia that Dr. Shah lists (pp. 80-81): * Negative social experiences like bullying, abuse, violence, or exploitation * Feeling emotionally "crushed" by institutional settings like schools, workplaces, or group homes * Sensory overload * Lack of autism diagnosis, which can lead to difficulties in accessing appropriate support, accommodation, or understanding * Feelings of pressure, guilt, and underachie...

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 h...

Dr. Shah describes her model as "psycho-ecological." Because this term is uncommon, I thought it would be worth discussing its meaning. Of course, the term "psycho-ecological" derives from two other terms: "psychological" and "ecological."  The Shah model is a psycho-ecological approach. This is not a term I had encountered before, and I wanted to meditate a bit on this word. I found it comforting, but I wasn't exactly sure why. As part of my meditation, I turned to looking up these words in order to think more deeply about their meanings and connotations. There were a few details in those definitions that I want to mention here, as I found them helpful. What I've written here is not at all technical or scholarly; it is personal. I found it useful to distinguish between the word ecological  and its close synonym, environmental. In some branches of study, the word ecological is a subcategory of environmental .  The word ecological is  fund...

 The first thing I want to do now is to give a more detailed recap of the treatment advice given in Dr. Shah's book (Catatonia, Shutdown, and Breakdown in Autism). I avoided getting into too much detail originally because I didn't want to be plagiarizing the book. But I think I was overly cautious in this respect, to the point of not sharing much information. I do recommend that people purchase and read the whole book; I couldn't possibly summarize everything in it that I found useful. But in the meantime I'll include what I can here. In particular, I'm going to discuss much of the content of Chapter 7, "The Psycho-Ecological Approach," which details the Shah model of recovery. What follows here will likely take the form of a reading journal: I'm going to work through many of Dr. Shah's recommendations, point by point, and discuss my experiences with them where relevant. However, I'm going to save a lot of my ruminations until the end/until a f...

It's been six weeks since I posted my original essay in five parts, which described my experience of catatonia and burnout. In those six weeks, I've made substantial progress in my recovery, and I've also learned a lot about the condition of catatonia. I decided to keep posting in order to make a record of what I've learned.  Here's a bit of a prelude to the posts I'm about to write, with a little bit of an apology. As much as I wish I could put together elegant, well-organized, essayistic posts, I'm finding that it's not possible for me at the moment. I'm learning so much, and still processing so much, that the information is coming to me in a rush, and I may be posting it in a kind of rush as well. My ultimate ambition is to go through these posts and revise them into some better-organized essays and articles. I'd like to put together a concise, helpful collection of self-help and advice for people dealing with the experience of severe burnout ...