Component 3. Increasing awareness and avoiding misdiagnosis.

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 do consults with other doctors/psychologists. See if you can put something like this together, or if a carer is able to do that for you. (Sometimes reddit is a source of recommendations.)


Comments

Post a Comment

Popular posts from this blog

Map of Autism Assessment Providers

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. 
Read more

The New York Times: Autistic Burnout as a "Secondary Pandemic" (Autistic Catatonia, Part 1 of 5)

In the middle of COVID-19, the New York Times ran an article which I have since sent to more people than I can count, as it explains, in part, what happened to me during the pandemic (and which never stopped). The title of the article was "'The Battery’s Dead': Burnout Looks Different in Autistic Adults." In autistic communities, the term "burnout" generally means something almost entirely different, and radically more severe, than in neurotypical communities. In the Times article, the reporter--Beth Winegarner--attempts to explain the phenomenon of "autistic burnout" for a lay audience. As she writes, "[A]utistic people, at some point in their lives, experience [burnout] on a whole different level. Autistic traits can amplify the conditions that lead to burnout, and burnout can cause these traits to worsen. They may become unable to speak or care for themselves, and struggle with short-term memory." Winegarten reports on the experiences ...
Read more

Component 10. Reducing decision making.

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 ...
Read more