You would think that, at this point, disclosing my autism would be no big deal. After all, anyone can find out I’m autistic by doing a quick Google search on my name, reading my blog, or checking out the titles of my books.
But recently, the issue of disclosure has come up, and I’m finding myself approaching it rather differently than usual.
As many of you know, I’ve recently begun a master’s program in History and Culture at Union Institute and University. The program is entirely online, and for each course, my fellow students and I discuss our work through a discussion forum on the Union website. I’ve been talking about my interest in the autism and empathy issue, about different ways to approach the issue, and about the challenges of reading research papers that, for all of their attempts at neutrality, put autistic people in a painfully dehumanizing light. So I’m making no secret of my interests. But I haven’t yet mentioned the fact that I’m autistic — not even after a fellow classmate told me about her godson who is on the spectrum and her desire to find ways to help and support him. In the past, I’d have run right in and said, “I’m on the spectrum. You might get a lot out of reading my blog. And feel free to ask me any questions you want!” I did refer her to the Autism and Empathy site. And when I did, my professor looked at the site and my blog, and responded very enthusiastically to both. So I’m not hiding, by any means. I’m just not being as blazingly direct as usual.
At first, I thought that it was just disclosure fatigue. After all, I’ve been writing on the subject of autism and disability rights for nearly three years, and I’m feeling rather private right now. And then, of course, fear was rearing its ugly head — fear that if I disclosed my autism, my fellow students would think that I’m an unemotional, unempathetic robot more interested in objects than people. And yes, I could disabuse anyone of that notion by referring them to my blog, or to the Autism and Empathy site, or to my books, or to my husband, or to my daughter, or to my friends, or to my neighbors, or to my employers, or to pretty much anyone who has ever known me, but the stigma that attaches to autism is still there, and I know it. Usually, I am quite pleased to fight against that stigma, but in the context of my online courses, I’ve found myself strangely hesitant.
Disclosure fatigue and stigma have definitely entered into my holding back. But something else is in play. It’s the feeling that I just do not want to run in and disclose my autism right away unless I consciously decide it’s necessary. It doesn’t mean I won’t disclose it. It just means that I don’t want to lead with it.
I think what I’m going through is very much akin to what my gay friends have mentioned regarding coming out. At first, a lot of them felt that they had to tell everyone up front that they were gay — both to show that they were proud of who they were, and to get any homophobic insanities out of the way. But then they came to handle it differently. Instead of announcing it up front, they just started letting it come up naturally, such as in conversations about partners, or social justice issues, or the like. So instead of leading with, “I’m gay,” they’d just say naturally in conversation things like, “My partner and I went up to the inn this weekend,” or “I started fighting for social justice causes way back when I came out and joined the gay rights movement.” After all, straight people don’t greet every new person with “Hi, I’m straight.” It just becomes apparent.
By the same token, neurotypical people do not show up in discussion forums and immediately announce the nature of their neurology. I don’t see any reason that I should either, unless I determine that it’s necessary, according to my own lights. And so far, I’m finding my new approach quite interesting.
The only really odd thing about holding back is that I’m noticing that my pronoun use is, shall we say, problematic? For instance, when I talk about autistic or otherwise disabled people, I say, “they” rather than “we.” There is a serious cognitive dissonance going on, because I’m basically referring to myself in the third person. I have a feeling that this dissonance alone will drive disclosure, but it will have to happen in its proper context.
So I wasn’t quite ready to participate in Autistics Speaking Day this year. I fully support it, of course, but I was in such a different place in my process that it was difficult to get into the gear of writing something for it. It will be interesting to see how I feel about the whole subject next year.
© 2011 by Rachel Cohen-Rottenberg
Rachel, how interesting, that I too have trod a similar journey with regards to disclosure. Now, I just let it happen naturally, through my work, my research and my daily interactions with people, as and when it becomes apparent or is appropriate. Thanks for sharing again, always so succinct and relevant!
SK, it’s so good to hear that we are thinking along similar lines. I feel that I am entering a new phase regarding my autistic identity, and it’s good to know I have company for how I’m handling the whole issue.
Rachel, this is how I feel too. I fully support Autistics Speaking Day but felt no desire to actually participate myself. Yes, I have Asperger’s, and it is part and parcel of me as are my eye and hair color and numerous other things, but first and foremost I am an individual and I don’t want my entire identity to be over-invested in being on the autistic spectrum.
Nikki, I agree with you. For a long time, my autistic identity was central because it explained so much about my whole life in a way that nothing else had. But like everyone else, I have several different identities — Jewish, female, etc. — and I’ve been giving them short shrift. I feel myself coming into a new balance with it all.
Yeah, I wanted to participate. And felt guilty for not participating. But I’ve sort of been in what I can only describe as “communication overload,” a combination of slight disclosure overload and general job stress and pressure to catch up with people I’ve neglected because of general job stress. So I didn’t. But I enjoyed and was thankful for everyone who did write something.
It’s funny, I was just thinking today about how, in a way, the gay people in my life have made it safe for me to be doing what I am now. They really went first to demonstrate how this is done.
I’m still working on replacing “they” with “we” whenever an explanation of autistic thinking or feeling comes up–I think I’m almost there.
Chavisory, it’s interesting that you were thinking about the ways in which the gay people in your life have blazed the trail for you. I think that being autistic has been one of the reasons I’ve always gravitated toward the LGBT community. LGBT people have a lot to teach me about identity, self-respect, advocacy, and being myself in the face of stigma.
I mainly didn’t because my blog isn’t autism specific–while neurodiversity falls into it’s purview, that’s not the focus of my blog. And since I’ve done a couple autism-related posts lately I wanted to touch on something else.
That, and to my knowledge I only have two regular readers.
I know what you mean about the we/they issue, though. It still crops up in my thought processes, depending on the specific topic and the circumstances of the conversation. Some issues I feel closer to that others, so there it’s always ‘we’. In others, I don’t feel like I’m talking about myself (or just don’t want to call attention to myself) so I use ‘they’. I’m still not sure how I feel about that dissonance, but I’m using ‘we’ more than ‘they’ so I’m not too concerned. I’m on the spectrum, but not everything about autism relates to me specifically.
Jayn, I’m really interested in hearing about your experience with using “we” and “they.” Sometimes, using “they” feels right to me. I don’t relate to every single thing that every autistic person might say, feel, or do, and sometimes, I feel the need to make that distinction and not subsume everything under “we.”
I really like the disclosure comparison.
Thanks, Jim. A particular conversation that I had a long time ago with a friend came to mind as I was writing, and then I realized how many times I’ve watched LGBT friends naturally bring up partners or issues in conversation. It feels like a good model for me right now.
Rachel I commend you for speaking out in this way, knowing some people may not agree with you. You always write such thought provoking posts. You make a very valid point & it makes complete sense to me. My boss is gay and he is very open, never hides it, but he certainly doesn’t walk up to people and say Hi, my name is ____ and I am gay. But if discussing going on vacation he will mention his partners name & it becomes apparent. Although I clearly advocate for my son I do not walk up to people and announce Hi I am married and have a son who has asperger’s but I don’t hide it either. I let the personal facts of my life come up naturally.
It sounds like you’ve found a good approach, Aspieside. There’s a lot of territory between hiding and directly announcing oneself.
Rach
What a lovely post
I commend your honesty and your spirit
Sometimes in my post I also dont want to talk about autism – just about life
I think autism-fatique and activism -fatigue are very real phenomenon
But then other times I am obsessed and fascinated by it
I swing between these extremes
In my work group I am one of the few women and sometimes when I talk about autism – I tell them its my “golf” ( as golf is all that the men talk about !)
You do so much for our community – dont ever feel guilty about taking some time off
Thank you so much, K! I’ve needed to post less frequently these days, as my work and grad program have been taking a lot of time and energy. I’m loving them both, but they leave me less time for posting. I’m hoping my readers will understand!
I’m an Aspie and understand where you’re coming from. I think we all reach a time when being autistic is really no different then being, say, left-handed or brown eyed. It’s a part of us, but we don’t need to announce or flaunt it to everyone. I blog about it, support autistic causes, but I don’t go out of my way to tell everyone. If someone asks, I’m glad to discuss things, but it’s just one part of who I am.
It’s true what you say, Ictus75. I’ve been through a similar journey with being Jewish. I went through a phase in which I was very visible, both in dress and in activity. But after awhile, I wanted some privacy back, and to integrate being Jewish into my life in a different way. I think the same is going on with having autism.
It’s interesting you bring this up. I’ve been feeling the same way about disclosure. I’ve been feeling that I should bring it up when I need to or if I can tell that things are getting complicated and miscommunications will probably occur.
I’ve never had an experience where I’ve really felt like things have turned out really well for disclosing. In the past before diagnosis, I think I’ve just come across as really sensitive, quirky, maybe depressed w/low self esteem. People somehow seem more distant when I disclose autism. Idk how to pinpoint it. There may be a distance though, on my part. I think I’m much more disengaged then I used to be. I no longer try so hard to make a connection. I can tell if it’ll be there or not upon meeting someone. Always have been able to. I don’t feel the need to work so hard conversing w/people that I know if a conflict came up, they would in a way expect to handle the way they would w/anybody else and then would be caught off guard by my way of processing and overwhelm and essentially back off or blame me. I need people who are very patient and I can usually tell if they are right away. Most people I encounter are not to the degree that would work for me so I don’t feel the need to engage w/them further. Not to say I haven’t in the past but, it has NEVER worked out.
I now know it’s not about me working harder so I just don’t have the energy to engage w/most people anymore. It makes me sad though because I feel really disconnected but, I know too, that I never really was connected before and I always hit a wall and would become depressed and things felt superficial and that caused me to feel depressed. I feel much more connected to myself than ever before and loneliness has really set in because at least before I had a hope that if I tried harder eventually a connection could be made. My close friends have always just happened. My closest friend doesn’t live near me anymore and is married w/2 children so talking and visits are a rarity. I don’t really get much satisfaction from online friendships. I certainly enjoy reading what write and feel less alone that people are out there like me but, I’m not much of a typer to comment and chat on a bunch of stuff on a regular basis so I don’t really feel connected to where I don’t feel lonely.
I much prefer spending time w/people actually that’s my primary love language and so few people have it to spare. I don’t have the stamina to try to meet many new people anymore and knowing it would have to “just happen” if it was going to work anyway. I just don’t have hope that I used to have that kept me going. Only hope that I’ll cross paths eventually w/someone I connect with and it’s been so long now that I’m very weary. Sorry, I’m really struggling with getting the right wording to convey the meaning I intend. It probably makes some sense but, it doesn’t seem to convey the depth I intend and it’s not flowing like I want so I’ll stop here. p.s. I switched to the name I comment with usually. I think yours is the only one I hadn’t switched over too.
Eliana,
I’m sorry that you’re feeling so lonely. I’ve definitely been there, and sometimes, I still am. Like you, I always have a sense about whether a friendship will work, and I don’t go out of my way to try to make things work with people who I know are never going to get it. My instincts are very good for the people who will.
I’m lucky in that I live in a very quirky little town. I find that I run into other folks who are also marching to a different drummer. I’ve figured out that I need to keep my eye out for highly sensitive people, whether they’re autistic or not. Sometimes, there are dry spells around finding people to relate to; at the moment, I seem to be out of one, for which I’m grateful. I hope that yours will pass soon, too.
Eliana,
I’ve felt very similar to you about many of these things. For about a decade, before my diagnosis, I spent a great deal of energy trying to become that social person, at work and at home, and really, it never produced results. The terrible side effects were very high stress levels, feeling disingenuous all the time, feeling like a hamster on a very fast wheel, who would never get to rest until he died or passed out. I would end up going through cycles where I’d have a meltdown every six months, then feel somewhat better, but get back on the cycle.
The last few years, I’ve been stripping away some of these bad learned habits, and getting back to a more genuine self. I still do things differently to ease friction between myself and others, but when things go wrong socially, I no longer automatically blame myself, and I don’t really feel that bad (I used to think this detachment made me a cold person, something my close friends would laugh at).
I have a very good, close relationship with my partner of five years, and sometimes I feel lonely. I don’t believe this is something that can be fixed by having more friends, or having a partner, it’s just something that happens when somebody is as different as me, and maybe you. I will never be the popular guy, I will never have many friends, I will always be an acquired taste. Nowadays, I just don’t spend as much energy trying to get people to like me or tolerate me, and I find I have better, healthier friends, when I’m choosing them, instead of letting them choose me.
Take care of your self
Yes, I need to live in a quirkier area. I’ve thought of that. There’s pockets here and I go to coffee shops and there’s usually people there, but I don’t really go to meet people. It’s more of an escape because @ my house I can’t really be myself.
I used to keep my Aspergers a secret, since I thought it was personal information that only close friends should know about. Recently, I decided it was nothing to be ashamed of, and I am more open about it. But I don’t flaunt it, either. If it comes up in conversation, fine. If not, nobody knows. I am 50 yrs old, and have lived with neurotypicals long enough that blending in is second nature to me. People just assume I’m a little eccentric, unless the topic comes up somehow. That’s fine with me, too.
I’m with you, John. Balance in all things.
It’s possible this is a stage many of us go through. I’m currently on the fence about disclosure. I still disclose at awkward times, but figure if somebody can’t deal with awkwardness, they and I are not a good fit. I don’t really want to cut a swath through possible friendships, and I know that they often require tact, time and patience, and sometimes I can do that, sometimes I don’t. Goodness knows, I deal with lots of stuff from regular people that challenges me, why should it be so one-sided?
I agree, Ben. Very few people (okay, none) have ever come up to me and said, “You know, I’m not very tolerant of people who are different, and I just want you to know that right away.”
When I was taking online classes for my bachelor’s degree, I was always up-front about it in the section set aside for personal introductions, but I pretty much left it there in the introductions unless it became pertinent to a discussion (like when we were talking about employment justice).
I don’t know if your school has introductory posts, but if so, you might want to try mentioning it there. You’re a writer, a wife, a mother, and an autistic self-advocate. All are important parts of who you are; none really define who you are; and none of them are really a “big deal.” If you treat it as something that just is, chances are most people will do the same. There’s ways to be honest and open about it without “outing” yourself in any kind of big way.
I’m not upfront about disclosing unless I feel I really need to. I’m even sensitive about voicing my opinions and sharing my personal story where people that think they know me can read all about me – that’s why I take comfort in using a pen-name.
I haven’t felt motivated to write my blog lately. Maybe I’ve said all I have to say on this topic for now and am busy focusing on other parts of my life?