Announcement: New Forum for Trauma Survivors and People with Serious Mental Illness

I have set up a new support forum for survivors of trauma and abuse and people with borderline personality disorder, dissociative identity disorder, PTSD and related conditions. In order to join, you don’t need to be both a trauma survivor and have BPD or something similar – it’s okay if you fall into just one of these categories. For now, members need to activated by me before being able to participate. This is to prevent trolls and spammers from using the forum, so don’t worry about not being allowed on the boards. Go to the forums and enjoy.

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The AQ-Test on Facebook

Even though I haven’t seen it on Facebook myself, I heard from several sources that the Autism Spectrum Quotient test (AQ-test) is now there inbetween quizzes such as “Which Spongebob character are you?” and “What color should you due your hair?”. The AQ-test, developed by Simon Baron-Cohen, is used as a screening instrument in the diagnosis of autism spectrum disorders.

It doesn’t really surprise me that this test made it to Facebook. It’s been online on several sites since at least 2003, when I first took it and scored 43.

In fact, it suprises me more that this test is apparently psychometrically valid enough to be used as an autism screening tool. In my opinion, it measures how much you want to be on the autism spectrum: when, in 2006, I wanted to prove how tests you find on the Internet are not reliable, I took it again and scored 22 – just barely more than the average NT.

The fact that the AQ-test made it to the world’s most popular social network, does prove how popular autism is. This is not surprising, since it has been “in” for at least ten years. Autism is a popular catch-all diagnosis for children who do not quite fit in as well as serial killers. People call politicians who don’t listen to the people – essentially all politicians when it’s not election time – “autistics”. In short, autism is a popular term for anyone who isn’t quite acceptable. Which is ableist and psychophobic. But autism is also the diagnosis du jour for geniuses, which is also ableist, since it turns real autistics into stereotypes.

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Speak Up on Shutdown

There’s a campaign on November 1 called “Communication Shutdown”. The idea is for people to shut down their Facebook and Twitter for a day as to get an idea of what it is like to have the communication difficulties autistics experience.

I am wary of disability simulations in general, but this one is particularly bad. Online communication is one of the venues by which autistics access contact with the world, so shutting that down would essentially be shutting down the mode of communication most accessible to autistics.

Furthermore, if you really want to get an idea of what it is like to have a communication shutdown, you should stop all communication for a day. Don’t answer when someone asks you a question, because you can’t speak due to overload. Of course since you are not really experiencing overload, you will still not experience what it is like to have an autistic shutdown, but you will come closer than if you just shut down your social networks for a day.

Many autistic bloggers have called onto autistics to speak up on November 1 and raise awareness of what it is really like to be autistic. I will join them, and hope enough NTs will have missed the call to shut down their Twitter or Facebook, so that they will actually hear what I have to say.

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Canadian Government Fights Court Battle Not to Make Websites Accessible

I am not a Canadian, but this astonishes me. The Canadian governmnet is fighting a court case in order to not have to make its websites accessible for screen reader users. Anna over at FWD?Forward has extensive coverage. I am as surprised as she is that the government is willing to pour taxpayer money into this case rather than putting that same money into making their websites accessible. Speak of cost-effectiveness, for once. Three million Canadians are blind or partially sighted, so this court battle is not just about the person who started it. Three million Canadians will benefit if the government stops its efforts to fight a court battle and pours the money saved into accessibility projects.

Anna is calling onto Canadians to E-mail their MPs. I am not a Canadian, so I cannot do that. However, I can echo her request to all contact your MPs and let them know what you think. Anna has a sample E-mail you can use.

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Autistic Teen Enabled to Communicate through Social Networking

I just read a story about an autistic young woman who is enabled to communicate through social networking. The “inspirational” framing of the story is a bit problematic, but I like the emphasis that is finally being placed on the way modern technology can enable autistics who are thought to be unable to communicate, to express themselves in a meaningful way. Besides, this once again dispelas the myth that those who can write coherently on the Internet, must be otherwise verbal.

Even though I can speak, the Internet, starting in 2002, opened the door for me to further communication and interaction, the latter of which was pretty limited at the time. I remember how the Internet enabled me to connect to and learn from other people with similar experiences to mine, which I was before pretty much unable to.

Still, till this day, I find it easier to communicate via the Internet than face-to-face. People in my off-line life sometimes find it annoying that I don’t tell them things that I do put on Twitter or on this blog, but it is the way I express myself the easiest.

Of course, ideally speaking, a person with a disability who communicates via the Internet, should not have to be portrayed as connecting mostly to people interested in that disability. Therefore, I’m a bit annoyed by the fact that the story says Carly Fleischmann communicates mostly with people who want to learn about autism. If autism is her interest, that’s fine with me, but disabled bloggers or Tweeps are not there to educate or inspire. There is a possibility that we may want to connect for friendship, too.

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Support Site Used for Drug Marketing

Natasha Singer at the New York Times writes an interesting article on patient social networking sites like PatientsLikeMe, and the way they’re used to collect individual health data fro direct-to-consumer drug marketing.

PatientsLikeMe is a community for people with neurological diseases such as epilepsy and multiple sclerosis, where they can share their experiences with various drug treatments with othrs. People can create extensive profiles, which are useful for finding people with similar characteristics, so that you can compare notes on what works and what doesn’t. However, this same information can be analyzed by pharmaceutal companies, and PatientsLikeMe actually actively promotes this. It is not its intention that pharma companies will market to individual patients, since their goal is that companies learn from patients rather than the other way around, but of course direct-to-patient marketing does happen as a result.

Of course, one’d say, if you read the privacy policy, you’d know what happens to your information when shared on PatientsLikeMe. PatientsLikeMe, after all, is very honest about its sharing with third parties. This is one more reminder to always read privacy policies, but I know that many people don’t. That way, medical information could be distributed to third parties and used for marketing purposes without informed consent, when all the patients thought they were doing, is sharing support with other patients.

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Should Mental Health Professionals Google Their Clients?

Recently, some discussion has sprung up in the Netherlands around whether psychiatrists or psychologists should google their patients. The Dutch Association of Psychiatry (NVVP) says that information that has been put on the Internet, is public, so anyone should be able to view it, including psychiatrists. On the other hand, the Netherlands Institute for Psychologists (NIP) disapproves of the googling of patients by psychologists, because it can impact the treatment relationship negatively. It is also reasoned that the information relevan to treatment should come from the patient directly.

That is where it gets a little troubling: some patients simply do not or cannot give the information relevant to their treatment. Googling without consent is, in my opinion, not productive in this case, but information gained elsewhere, such as online, may sometimes help in this case. For one thing, the fact that my high school tutor read my online journal back in 2004 opened the doors to my eventually seeking help for my issues. I would never have been able to communicate these issues any other way.

On the other hand, does the end justify the means? Six years later, I feel that both of us overstepped our boundaries by sharing my online journal, because that way, he was dragged into emotional issues no teacher should have to help a student deal with. To be specific, he was the first who knew that I have insiders. It was not his job to deal with that, and the fact that he tried anyway, had some negative consequences. Maybe mental health professionls have a broader array of issues that is their job to help clients deal with, but still, boundaries can be overstepped here.

Currently, I give professionals consent to read my blog. I most likely wouldn’t have odne so if I’d still written as personal a journal as I did in 2004, because of the fear that we would again overstep our boundaries. Then again, the fact that the information that is on the Internet, is public, is the reason I avoid writing highly personal things on the Internet these days. In so far, I agree with the NVVP. However, I think most people are more careful, but a few are less careful than I am, and people with mental illness are especially vulnerable in this respect.

A last issue is of course the fact that the information people put online, no matter how careful or careless they are, was not intended fo rprofessionals to read, and may therefore be misinterpreted. Information may also be outdated or inaccurate, and most likely will be irrelevant to treatment. Is it ethical for a mental health professional to know about a patient’s sex life, what they ate for lunch today, or what they just spent E10,000 on, when there are no other indications for sexual issues, eating disorders, or a spending problem?

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The Lack of Information on the Modern Web

Even though I am an avid blogger and not entirely against Web 2.0, I sometimes wish to go back to the good, old days of LiveJournal, DiaryLand and further mostly Web 1.0. Today, I find myself searching Google for a relatively sciencey subject about which I hope to find lay-friendly information. Lay-friendly it gets, but the information to entertainment ratio is lower than low: the first results I get are old E-mail list and forum messages.

Now I expect this would’ve been the case in 2005, too, since these forums and E-mail lists existed back then, but then we still had good, old Google Directory. It still exists, I must admit, but it looks like, apart frm the social networking section, it’s not been updated since 2002. Expecting to find information on at least one of the combination of medical terms I’d entered in the Google search box, I browsed the directory. I was greeted with “Sorry, [page title] is no longer online” on the only page I found in Google Directory on my topic of interest that didn’t look like it was a forum.

But forums are great, of course – when you ar enot looking for information. Except if you can’t even find them. If you check the Google Directory > Society > Disabled > Chats and Forums, for example, most places you will be pointed to are long-defunct Yahoo! groups and message boards I frequented in 2002. Sigh. Where are Google’s Web 1.0 editors?

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Back Online on Mobile Connection

I hereby declare myself an official Internet addict. I’m glad it will not be a clinical diagnosis in DSM-V, or I would have an additional label three years from now. Barely a week into the Internet outage, I arranged for a mobile connection. Thanks to Open University, I qualify for the student computer and Internet appliances vendor, so I got a great deal: unlimited access at 3.5Mbit speed for E20/month. My boyfriend and my sister double-checked the fine print, and there doesn’t seem to be any, apart from the fact that the speed is probably an illusion, and, of course, the fact that, if I develop cancer or Alzheimer’s a year from now, I cannot sue the mobile company.

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Internet Hiatus, Timeframe Unknown

One of the ward computers had a virus. As a result, the Internet service provider blocked our connection. Unfortunately, someone deleted the antivirus log files, so we cannot comply with the ISP’s requirements for restoration. All my ward staff are whining about how the ISP is “punishing” them for a virus that they got destroyed, but I can see where the ISP is coming from. You know, we had Trojans, which are pretty nasty viruses. Heck, we could’ve been reported to authorities, or the entire institution network could’ve been shut down rather than just my ward’s patient computers.

Even so, I am highly frustrated at the lack of Internet access, because many of my activities take place online. Fortunately, I mailed a new wish list for audio books to the library just before the access was disconnected, so I still have stuff to read, for now. I am even more frustrated by the unknown time interval for the outage: weeks, months? Will we ever get our connection back at all? In any case, this is to notify you that I’m not blogging unless or until I get some kind of Internet connection back – I’m considering a mobile connection. I’m now on my home connection, but I will not be coming here for computer use anymore, I think.

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