Over the past little while, there has been some uproar on a number of blogs and autism-related email lists and newsgroups over some conflicts that I am not really qualified to comment on because it is too complicated for me to understand, nor do I want to be directly involved. (Like my previous post said: the conflicts are not helping)
However, some very interesting conversation has arisen about the nature of pseudonyms and anonymity on the internet. This is a topic very near and dear to my heart, so here are my thoughts on it.
I can understand somoene's need for anonymity because I have had to be very careful about this in my own life. Four years ago, I had to spend a lot of money to completely change my legal name because of the association with autism that my previous name had.
When I was a teenager, my mother had told me that the news had wanted to do a story on the family when I was a kid. Mum refused because our last name was unique and she didn't want me growing up with the A-word (autism) hanging over my head. She also didn't want her and Dad to be associated with that word either.
The story was supposed to be very positive... how could this possibly be a bad thing???
I never really understood the answer to this question until I was 28.
In 2003, I was a year into an excellent job in a new career field and was in a good position for promotions and such. My career aspirations have always been in a managerial and professional direction because that is the kind of person that I am. (And perhaps that is one of the things I was told I'd never be able to do being on the autism spectrum!) I was in a long term relationship, with the possibility of becoming engaged and things were looking up!
I attended a fundraising dinner for a local autism society and, being a well-dressed and very articulate person on the spectrum, I became instant "news-fodder". A representative from one of the major local newspapers did an interview and a local TV news reporter interviewed me for the 11:00pm news which would be aired that night. Both interviews were very positive; focusing on my strengths, hope and potential. I was very honoured to have been interviewed.
My father saw the 11:00 news that night and absolutely freaked! Did people at work know about my "condition", he asked? Well... no. "Well, now they're going to know," he said. "Do you have any idea of what you have done?? Do you know you could lose your job over this??"
"If they fire me, I'll just sue the pants off of them!" was my very naive reply.
Fortunately, people at my workplace tended to be early to bed or not too interested in what the TV news had to say, so no one of any importance other than my dad saw the interview.
The next day, I got a call from the newspaper reporter wanting to ask some more questions. I answered them and recalled my father's words. I asked the reporter where this article would be placed. She assured me that it would be somewhere in the Health and Lifestyle section of the Saturday paper because it wasn't a huge story. Well... that would be ok, I guessed, since no one ever reads that section anyway! A fellow came and took some nice pictures and that was it for about a month.
In early April of that year, I went to pick up the paper from the front step and found a huge, full colour picture of me on the front page with the headline being about autism!! Holy crap!!! This was not the middle of the Health and Lifestyle section on the weekend! This was the front page on a weekday... everyone and their dog would see this!
Lesson number 1: Don't ever believe a reporter when they say something will be published in a certain part of the paper. The editor makes the final decision and autism sells newspapers.
Lesson number 2: If you have anything to lose, even if it seems like the exposure will be positive, just say no to publicity via media.
I went to work feeling like a pariah. The initial response from everyone I ran into was very positive: "you achieved so much, good for you!", etc. I thought maybe this wouldn't be too bad until I found that my boss all of a sudden did not think that I was capable of being a manager, when the week before, I was next in line. Some people at work started asking if I could count cards and other things that were seen in the movie Rain Man.
A few months later, I was on the news again to give an insider opinion on a crime committed by someone claiming to have Asperger Syndrome. Despite successfully working on a major project, my contract was suddenly ended and I was at risk of losing my job at the company I was a contractor for. I was sent to cover for someone on one of our other contracts and then told that "there was no work for me" and I was given two weeks notice.
I looked for jobs and never got a call from anywhere that I applied at. Just for a lark, I decided to use a different first name and applied for the same jobs with the same qualifications on the resume. The only thing different was the first name (I used one of my middle names, so it was still a 'legal' name). All of sudden, I started getting calls for interviews!
Fortunately, the temp contract that I was assigned to turned into a full time one and I ended up working for the company for over five more years... but stuck in admin positions. Even my family doctor started treating me differently when he found out... all of a sudden I was stupid and should be on antipsychotics.
A year after I got married and we were buying our house outside of the city I was born in, I decided to change my first and last name legally. It cost a lot of money to do, but since then, I have changed jobs, gotten a management position and have gotten very involved in the new town that we moved to. I do not want anyone to find out that I was diagnosed with AS at the age of 2 after what happened to me the last time.
Here's something parents rarely hear from their kids: "Yes, Mum and Dad, you were absolutely right!" And they were. I wish I'd listened!
I am now involved with an autism society in my former hometown, but any public information about me lists me as a board member and a psychology student with a special interest in the subject. Just last week I was asked by a staff member to do an interview on the news and I said that I was very, very uncomfortable doing that. I would only be a representative of the agency quoting stats, but still I was leery. Luckily, it didn't happen, so I was off the hook. I'm still doing speeches and some advocacy work because I believe in the cause, but I have to be very, very careful about what information is put online because of the past.
Perhaps one day, I'll be in a position or doing work where it will actually be a benefit that people knowing of that diagnosis will actually be a benefit and not a detriment. I feel like I have to live in fear, which I don't like. Maybe one day that will change. Until then, I must err on the side of caution and maintain vigilance. Name changes are expensive and so is moving to a new town!
There has been a lot of talk about pseudonyms due to the uproar about ASAN and one member's full name being posted on a mailing list and that person asked for that post to be removed. This led to accusations of that person being possibly untruthful or deceitful. Why be a part of a large, well-known advocacy group, but hide behind a pseudonym?
Publishing a full name can cause a lot of trouble, especially when someone did not ask for their name to be published. I know this from personal experience and would ask that people be cognizant of others' privacy, Fortunately, the internet allows us a voice without necessarily revealing our identities. Some unscrupulous folks take advantage of this and use it to be a troll or cause harm. Some of us have something to say and good things to do, but do have to be very careful. Some of us are in the closet and people generally try to avoid "outing" a person. It's sad that it has to be that way, but that's the way it is.
I don't want to lose my job, but more importantly, I can't afford to lose my job! Why? Because right now, I am the only one with a job in my household. My husband lost his job in early 2009 and EI ran out back in early February of this year. I only work part time, so my pay only covers the mortgage payment. I'm now working 3 jobs as a result so I can pay the rest of the bills.
If I lose my main job, we could lose our house and all of the things we've worked hard to obtain. I will not let negative attitudes about AS ruin my chances of making a living again.
(Please send any prayers or good thoughts my hubby's way so that he can get a job real soon! Thanks!)
Some may be okay with their name being published because they:
a) have nothing to lose like their only form of income, or
b) it enhances one's quality of life or credibility to have the name associated with a subject such as autism. (i.e.: they can receive services and such because they have this diagnosis, or they work in a field where their being on the spectrum actually lends credibility to their work)
Where I live, a person on the autism spectrum cannot receive services unless their IQ is under 60 (It used to be 75). So, no matter what happens, I will never qualify for services under this diagnosis because mine has been scored at around 135. I don't get tax breaks, credits, services or assistance of any sort... nor will I. Therefore, I have no choice but to support myself and my husband until he gets a job too.
I like being independent and would probably go crazy if I had to put up with the crap I put up with as a child in an institution and the crap that many people I know have to deal with in group homes, institutions and other facilities. I don't ever want to be dependent on someone or be at their mercy. I thank God every day of my life for my independence. My parents probably do too.
In order for me to maintain that independence, I have to work and be involved in my community... which could be jeopardized by being associated with the A-word as I was in the news back in 2003.
Unfortunately, one autism group I am associated with published my name in a PDF newsletter a few years back, so it does show up on Google and other search engines. I've done what I can to ensure that it's buried a few pages down, so it's not readily available, but if someone spends some time, they'll find it. And then what?
That is why I use an alias on lists like this or anything to do with autism. I'm sure others have other reasons.
Does that make me a "low down dirty deceiver"? (Firefly quote!) Some might say yes, but I do not believe it does.
In life, we do what we must to survive. This is what I do, and I'm sure this is what the person from ASAN has to do too.
Even if the exposure is positive, the fallout can be truly devastating.
