Archive for November, 2010

Last week, the psychiatrist responsible for Alex Oudman’s long-term seclusion, was reprimanded by one of the Dutch regional medical disciplinary boards. Reprimanding is the second lightest sentence, after a warning, but it has a huge impact on doctors. Alex Oudman is a severely autistic man who lived in a mental institution in the northern Netherlands when he was secluded for months at a time in 2008. His family made sure the media was alerted, which even led to questions from MPs and new government policy to reduce the amount of seclusion in Dutch institutions. The family also went to the disciplinary board. I do not know yet whether the psychiatrist will appeal the reprimanding.

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I am disabled and childfree, which means I choose not to have children. While the default assumption is that people my age will eventually have children, if they don’t have them already, this does not go for disabled peple: they, especially women, are automatically assumed to be childless, and the reason is supposed to be the disability.

In my case, this is partly true: I do not see myself capable of caring for children responsibly, and my disabilities are a reason for this. But other factors, such as the fact that I simply do not like children, play a role as well.

Besides, it’s simply none of your business. If I’d chosen to have children, that would be up to me. Now that I choose to be childfree, that is up to me, too. The only person whose business the choice of having or not having children is besides my own, is my boyfriend. So stop assuming that disabled women will automatically be childless, and if they choose to be, stop assuming the disability is the reason. It may be or it may not, but it’s simply not for you to know unless we choose to inform you.

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Yesterday, at the official Autism Speaks blog, there was a post about agricultural communities for autistic adults. These, in the Netherlands also known as “care farms”, provide housing and employment for adults with autism in a supported environment. They range in size from seven to thirty beds according to the article, so none are institution size. That doesn’t mean no institutional power dynamics though, so that is a possible problem: size is not what makes an institution bad.

The new organization, Agricultural Communities for Adults with Autism, aims to collaborate to form two hundred of such communities around the United States. The reason is that the current communities have huge waiting lists. The same goes for care farms and especially workhomes in the Netherlands, which is what this initiative reminded me of.

A workhome is a sheltered living and working environment for autistic adults. Unlike these agricultural communities and most care farms, most workhomes are part of mental institutions. However, as they operate independently, the problem of congregation is largely solved. Unlike at a care farm, workhomes offer more varied work opportunities, such as housekeeping, arts, industrial work, etc. At least one is a farm, which provides both agricultural and other work. Like the agricultural communities mentioned in the post, most provide day programs to adults living in the nearby community. Some, like the farm workhome, are part of a community, while others are located more segregatedly, but in the Netherlands, nothing can be on the edges of civilization due to our population density.

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Today, I have been in the mental institution for three years. This third year – which will be my last full year in this institution since I was accepted to the workhome -, was quite important. I made quite a lot of progress in trusting people. I came out multiple to my psychologist and primary nurse last May, and came out about some of the bad things that happened in the past. I still find it difficult to talk about that though.

It opened doors, because I may be able to get
EMDR treatment for the bad stuff. The psychologist who does that has a waiting list a mile long, so it will take a while if it is at all possible before I move to the workhome. And that is of course assuming I meet the criteria, which I have a vague feeling that I don’t. However, even if the EMDR isn’t going to work out, my having trusted the psychologist with the information I trusted her with, has already opened possibilities.

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I recently bought Life After Trauma: A Workbook for Healing by Dena Rosenbloom and Mary Beth Williams. I am currently scanning it, which results in a far fairer quality than the other book I’m currently scanning. As I work myself through this book, I plan to review the book as it goes.

In the prologue, the reader is first introduced to how this book can be helpful and how it is organized. You are gently being prepared for the feelings that might arise as you read through the book, and are cautioned to lay the book aside and perform self-care activities if you start having increased dissociation, flashbacks, or other unpleasant or strong emotional experiences.

At the end of teh prologue, you are encouraged to create a self-care plan. This is done by listing your triggers as well as things you can do to care for or comfort yourself when triggered. A list of examples of self-care and self-soothing strategies is provided. That way, it was rather easy for me to think of a relatively long list of self-care strategies. While the examples provided are very general, I preferred to be as specific as possible. For example, I listed the types of music I can listen to, because some music is especially triggering for me. Of course, the authors encourage you to add to your self-care plan as you discover new self-care or self-soothing strategies while working through the book.

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Today, people are shutting down their social networks for a day to simulate what it is like to have autistic communication difficulties. In a response, autistics on Twitter, Facebook and around the blogosphere are responding by educating the public through communication. I have chosen to communicate about what it is truly like to lose the ability to communicate.

For me, loss of speech has several causes, autistic overload being just one of them. In that case, my sensory system is so overwhelmed that I lose the ability to respond to my environment. This includes not only a lack of speech, but a general inability to interact. I may engage in self-stimulatory or self-injurious behavior to regulate my sensory perception.

Another reason I may be unable to communicate, is anxiety. I refer to this state as “locked up inside”, after someone on a selective mutism listserv. When in this state, that may last for very short if it’s situational, I do try to compensate by making contact with people in other ways – for example, by staring at them.

Lastly, I can be unable to communicate or have word-finding problems when something unexpected happens. In this case, the reason I can’t communicate is that my plan for communicating is interrupted. For example, if I want to speak to a certain nurse, and another opens the office door, I tend to have difficulty finding the words to communicate what I want.

In general, I write better than I speak, and I express myself better in English than in Dutch, even though Dutch is my native language. I am getting better at expressing myself in Dutch speech, but I still encounter barriers.

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This month, I will be hosting the first Blog Carnival of Mental Health. The theme for this month’s carnival will be diagnosis. Interpret it broadly. When were you diagnosed with a mental illness? What is your diagnosis? What do you want to change about your diagnosis, if anything? If you are a mental health professional, how do you diagnose clients? What is the most stigmatized diagnosis, in your opinion? The list of possibilities is almost endless. The deadline for submissions will be November 27. I will post the carnival on November 30. Submit posts in a comment on this post.

Also, I am still looking for hosts for the Blog Carnival of Mental Health. Slots are open from February, 2011 onwards. If you want to host, you can leave a comment here, too. Please let me know where you blog and what month you would like to host. For clarity’s sake, LiveJournal and Dreamwidth blogs are welcome to submit posts as well as to host.

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