The Disclosure Dilemma

I have read several posts on Facebook recently concerning disclosure of Aspergers Syndrome to others. It is a topic I have always found fascinating so I thought I would also discuss this on my blog.

Personally, I have noticed among the Aspergers community two opposing but equally as prevalent attitudes regarding disclosure. Some people will choose never to disclose their condition, even to their own relatives sometimes, whilst others, usually people who have received their diagnosis in adulthood, like to disclose their Aspergers to everyone. I fall in the middle of these two extremes. I don’t make a point of telling everyone I meet that I have Aspergers but all of my friends and most of my work colleagues know I have Aspergers and I do make reference to it on my Facebook page so I don’t make a point of hiding it either. I did go through a phase when I was at university of making it the first thing I spoke about whenever I met someone new. I think this was because it was the first time in my life that I was responsible for deciding when to disclose and I thought everyone should know about it. This lasted for around a year and then I calmed down and took on my current stance of accepting my Aspergers but not making it my main talking point with everyone I met.

I can understand both sides of the disclosure argument. I can understand people who want to tell everyone about Aspergers. As I have mentioned previously, I have noticed these people tend to have been diagnosed in adulthood, sometimes as late as their sixties. Many of them have lived lives of isolation and withdrawal, constantly being rejected by society but not knowing why. Most of them have been misdiagnosed with various mental health conditions such as schizophrenia, bipolar disorder, borderline personality disorder and various personality disorders. For them, finding out they actually have Aspergers Syndrome is a massive relief. They are fascinated in finding out as much as they can about Aspergers and, for lots of newly diagnosed people, it becomes an obsession. They are so relieved that finally their symptoms have a name that they become fixated with Aspergers and want everyone they come into contact with to know all about their Aspergers too. This forms part of their process of accepting the diagnosis. They may be furious that their condition has remained undiagnosed or misdiagnosed for so long. They need to express their relief at finding out the truth before they can settle. There are also people who are extremely proud of their Aspergers and like to disclose it to encourage other people on the spectrum that there is no shame in being autistic. We are people like everyone else and we should not have to hide so much of our personalities. I understand this viewpoint and agree with it, to an extent.

However, I can also understand why some people refuse to disclose their Aspergers. Unfortunately there is still a lot of prejudice surrounding Aspergers and autism in general. I have heard so many stories of discrimination, particularly when applying for jobs. Given that discrimination on the grounds of Aspergers is so hard to prove, I could not find any cases where an employer had been found guilty of refusing to employ someone with Aspergers Syndrome or other forms of autism solely because of their condition but we all know it happens (and this is not including the social expectations of the interviewers which mean that, a lot of the time, people with Aspergers come across as strange in interviews and won’t get the job even when there is no discrimination on the part of the interviewer). One of the most common questions on the main Facebook Aspergers page I post on is “Should I mention my Aspergers on my application form/after I have been offered an interview?” The overwhelming majority of replies advise not to disclose Aspergers until you are in post and find that it is causing you issues in some way. A few people have even been advised by recruitment agencies not to mention Aspergers on an application form. I personally do disclose my Aspergers on job application forms and have got 2 jobs with that on my application form so I don’t think it’s always a bad idea. In my mind, it comes down to honesty. I would not want to work for a company or individual that would not take me on just because they misunderstand Aspergers and, also, only disclosing when you run into trouble because of it runs the risk of you not being believed and people thinking you are making it up to avoid a disciplinary or being sacked. I think it is far better to be honest from the start. I know that it is extremely frustrating when people look at the word “Aspergers” and make all sorts of judgements based on how the media portray us but, eventually, you will find an employer who will either not be bothered by your Aspergers or, even better, see it as an asset, such as in the case of certain IT companies or universities.

Outside of the world of work, there are also attitudes that people experience that make them wary of disclosing their Aspergers. As I have mentioned on this blog before, I know of one young man in America who was banned from attending a dance club he loved following the Adam Lanza case because he has Aspergers and his dance teacher thought he may display violent behaviour, even though he had never displayed this sort of behaviour before. Another article I have linked to previously on this blog was about people protesting about having a six bed residential house for adults with autism and learning disabilities in their estate. A lot of peoples attitude towards autism seems to be, “I don’t mind autistic people unless they’re down my road/in my children’s class/living next door to me”. Discrimination against people on all levels of the autistic spectrum is a daily occurrence. However, to me, this illustrates so clearly the need for more people to be open and honest about their Aspergers. The more people see that it’s nothing to be scared of, the more accepting they will be. Ignorance is born from fear. If we take the fear away through education, we are helping not just ourselves but everyone else on the spectrum. I know that it may take an incredibly long time for the message to get through to people that we have feelings, emotions, needs and desires like everybody else, no matter where we are placed on the spectrum, but once it does get through, our lives will improve so much.

Of course there are people out there who have no interest in becoming more tolerant towards and accepting of people with autistic spectrum conditions. That’s unfortunately a part of life. I find that Aspergers is our radar for these people. The people that can see past the Aspergers are truly worth knowing and making friends with. The people that can’t see past it and have no interest in seeing past it aren’t the sort of people that are worth our time. To end today’s post, I will point out that, obviously, it is everyone’s individual decision as to whether to disclose their/their child’s condition but, before you make that decision, please think about the advantages that educating people can bring to the world. The world needs more compassion and more understanding-I try to contribute to that in any way possible and I truly believe one day, widespread discrimination against people with autism will be a thing of the past. I hope to be alive to see that day.

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4 Responses to The Disclosure Dilemma

  1. David Snape says:

    I sometimes do say to some of my work friends that I have autism but they instantly accept in who I am. I feel like anyone else in this world and you do point out some interesting facts and opinion from others about this dilemma. It is a brilliant post.

  2. oliver simpson says:

    Been reading your blog for a while and find some stuff of it very resonating with my own life of Asperger Syndrome as well. While I was discovered to be autistic at a young age, my parents never told me, and i only found out when I was 17 after years of clues, forced social interactions, some good some bad, but mainly trying to be a person that I was not. Overall, I feel neutral on it; it was not relief or depressing to learn about it. Just acceptance that it was a part of my life, but it does not define me either.

    As I doubt I would be much different if I was not autistic, a bit more natural in social interactions, but still mostly a person who is a simple person who likes his hobbies and tastes very much. Does not mind some social interactions, but likes his time alone, not oppose to possibility of romance, but not really desiring it or having a family (even after many years it still does not appeal to me).

    As for disclosing as in job applications, personally I disclose it if I think it is relevant, if it isn’t then it’s not really something to bring up, since i don’t see it as really affecting my work that much expect for a few things, and they don’t hold me back. Just affect my input at times, and one that i always work to improve on.

    That is how I see autism as a whole, yes it can bring its positive and issues, but overall it’s just another trait of the person, not the thing that defines them, and i think the world in time. For me Will hopefully come to recognize that if more people with autism and their parents can come to see that in their own way, as I feel that too many keep treating autism as something that is to having a disease or living with cancer.

    Alternatively, something to be pitied, ask anyone who has any physical or mental “disability” what they hate most, it is usually being pitied or being treated differently because of that, and that holds true for me as well. Which i reminded myself after playing the the visual novel Katawa Shoujo, which looks at some disabilties in an interesting light and some of the things i have discussed in my post.

    Keep up the blog, i enjoy reading the views of another person whocan relate to being an autistic person.

    • sjmarsh2013 says:

      I am glad you are a regular reader of my blog, Oliver. I find your viewpoint very interesting and you are very articulate. I hope you continue to enjoy my blog xx

  3. outoutout says:

    One aspect that I think gets overlooked in these discussions is the privilege in having the ability to choose at all. Some people couldn’t pass if they tried. Some people would otherwise be written off as creepy, criminal, or unemployable if they didn’t disclose, so there’s no effective choice for them.

    You brought up a really interesting point about people who’ve been diagnosed later in life versus as children… not long ago, I had a conversation with someone who couldn’t understand why other people on the spectrum were all so “angry” and “bitter” about their experiences. Turns out he’d been diagnosed at age 15 and had super-supportive parents and steady employment thanks to all sorts of supports and services. I had to explain to him that many of us, especially over a certain age, did not have those experiences; some of us had to deal with bullying and abuse and misunderstandings blaming ourselves because there was no diagnosis. I’m SO happy that’s changing for the younger crowd (esp my kids), but yeah… of course people are going to be elated/relieved that finally there’s a name for it, and want to share that with all the people in their lives who wrote them off.

    And I completely agree with you about the prejudice illustrating why openness is so important. It reminds me of all the discussions in the LGBT community about why it’s important to come out. Not only for your own mental health, but for wider visibility. “Hey, we’re here! We’re not some mythical unicorns or people that only exist in news stories; we live in your neighbourhoods, we shop in your stores, and our lives are more-or-less as boring as yours.” 😀 Because if people don’t think they know anyone on the spectrum, they are more likely to believe harmful stereotypes about us, and that’s not good for anyone.

    Aaaaand I see I’ve just written a novel here, so I’ll stop now. Cheers.

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