Burnout and Catatonia

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...