This is part 13 of the “I Think I Might be Autistic” series.
Disclosure, it turns out, is a sticky issue. My first instinct was, “This is great! I have an explanation for my difficulties. I’ll tell everyone and they’ll be as happy about it as I am.”
Er, no. Disclosure makes people uncomfortable. Most people don’t know what to say. Many will reassure you that it makes no difference and then proceed to treat you differently. Even in the people who are very accepting, you may notice the occasional patronizing statement or doubt about your competence–little shifts in the way this person sees you now that you’re autistic.
Not that you weren’t autistic before, of course. But handing a label as loaded as autistic to another person changes things, like it or not.
Who to Share Your Diagnosis With
Some people openly disclose to everyone. Others share only with close friends and/or family. Some people disclose in stages, starting with an inner circle and working outward as they feel more comfortable.
As you think about disclosure, keep one thing in mind: it’s irrevocable. Once you share your news with someone, you can’t unshare it. You also can’t guarantee that the person you’ve shared with will keep your disclosure private. They may inadvertently or intentionally “out” you to someone you aren’t ready to share with.
Still, many of the people in our lives already know that we’re a little different. Generally, most people choose to share their diagnosis with the people closest to them. This might include immediate family, close friends and/or a significant other. If you prefer not to share beyond this inner circle of people, be sure to make it clear when disclosing that your diagnosis is private information.
Beyond your inner circle, it may become harder to decide who to share with. Obviously, you don’t need to notify casual acquaintances but what about work colleagues, supervisors, professors or others that you interact with regularly?
It may help to consider the consequences of disclosing versus not disclosing. If you’ve only recently been diagnosed then you already have a good idea of what not disclosing looks like. Are you happy with the current situation? Would disclosing allow you to ask for needed supports or accommodations? Is it possible that disclosing would create more risks than benefits?
There are real dangers to disclosure in some situations. You can open yourself to discrimination and bias, especially when it comes to work, school, or your parenting rights. I’m not writing this to frighten anyone. Just be sure you’ve done your homework and thought through the possible consequences before choosing to disclose your diagnosis. If you’re unsure, consider talking with a trusted friend or mentor before making a decision.
What to Say
There are two ways to go about disclosure. You can make a full disclosure, using the words autistic, Asperger’s syndrome or autism spectrum disorder. If you decide to go this route, be prepared to do some education. There’s a good chance the other person’s first reaction will be “but you don’t seem/look/act that autistic” or “I never would have guessed” or some other similarly awkward reply.
Preparing a short script describing autism as a neurological condition that impacts your communication, socialization and sensory processing can be helpful. The operative word here is short. You don’t need to give the person a TED talk on autism. Just share a few facts relevant to your situation, including what kind of accommodations or supports you’re requesting.
If you aren’t going to request accommodations, it’s probably best not to disclose in a work situation, unless you’re the kind of person who is confident with being out to everyone. Because of the stigma associated with ASD, the risks of workplace disclosure can be significant and irreparable.
There is always the possibility that disclosure will bring with it the subtle, hard-to-prove sort of discrimination that doesn’t rise to the point of being actionable under law. Although autism falls under the purview of the Americans With Disabilities Act, human social interaction is unpredictable and fraught with gray areas.
You may be able to request accommodations or supports without using the word autism, if that feels safer. For example, if you have a job doing data entry in a noisy workspace, you can explain to your supervisor that wearing noise canceling headphones will enhance your concentration and make you more productive.
If this request is well received, you don’t need to disclose your disability if you prefer not to. If it’s not received well, you’ll likely have to disclose that you’re autistic to gain accommodations under the Americans With Disabilities Act. It’s a good idea to do some research about your rights and your employer’s obligations under ADA before proceeding. For example, here is a list of common types of accommodations.
While ADA provides a minimum set of rights and obligations, some disability-friendly workplaces may be willing to do more to accommodate employees. On the other hand, be aware that small businesses (fewer than 15 employees) are not subject to ADA requirements. That doesn’t mean that a small business won’t be willing to work with you on accommodations, just that they aren’t required to under law.
When to Disclose
There is one more caveat to the choice not to disclose. If you don’t share information about your disability upfront, sharing it when you find yourself in a bind will probably not be helpful. For example, two months into a new job, your supervisor calls you into his office and says you’re being put on probationary status due to poor performance. This is not the time to disclose that you’re struggling because you really needed to get all of your instructions in writing or you need to have tasks broken down into smaller elements with more closely supervised due dates . . . because you have autism.
If you know you’ll need accommodations to successfully complete work or school tasks, ask for them upfront. If you discover that you need accommodations in the course of doing a task, request them as soon as possible. Don’t wait until you’re on the verge of disaster. This will be seen by most people as “using your disability as an excuse.” Fair or not, that’s how it will be perceived, possibly making it harder to gain the needed accommodations or even to keep your job in the long run.
There is also a special situation in which you may need to unexpectedly disclose your condition: an emergency. Some autistic people carry a card or letter in their wallet briefly describing what ASD is and how it might affect their responses in an emergency. If you lose speech, respond negatively to being touched by strangers, or have sensitivities to flashing lights or loud noises, this information can be especially helpful for law enforcement and other first responders. This type of disclosure can prevent police or emergency medical personnel from mistakenly thinking that you’re drunk or intentionally uncooperative.
How to Disclose
I’m going to step backward here a bit and address this to those who are diagnosed and those who aren’t because disclosure is something that I found taking place at all stages of the journey. In the very early days of learning about ASD, you may find yourself needing to talk about your suspicions or realizations with someone close to you. As you move through the self-discovery and diagnostic process, you may need to talk with family members to gather information about your childhood or confirm details about yourself.
Disclosure doesn’t only happen after a diagnosis. It can take place in stages, along a continuum. So here are some suggestions that may apply during different stages of the process:
- Request a formal meeting or schedule a conversation. This signals that what you intend to say is important. Most appropriate for work and school related disclosures. Also good for situations where you’re concerned that the other party may not take you seriously.
- Raise your diagnosis informally in conversation, when the opportunity arises. Probably more appropriate for those you anticipate being supportive.
- Share an article about ASD. This is a good way to open the “does this sound like me?” conversation with someone close to you.
- Send an email or letter disclosing your diagnosis and sharing relevant background information about ASD. Good for disclosing to people you find hardest to tell, for example family members who you’re concerned might have a critical reaction.
- Share a form letter or informational flyer. An efficient way to share key facts in situations like emergencies or when requesting accommodations from public places (like a theme park). The book Ask and Tell has some good examples of form letters for specific situations.
- Enlist an ally. If you’re faced with an especially hard disclosure situation, an ally can help you deliver the news, answer questions and/or offer moral support, especially if there’s a chance you might become nonverbal during the encounter.
Why Are You Disclosing
Ultimately, this is the most important question. Before you disclose to someone, ask yourself what you expect to happen. Are you disclosing to ask for accommodations or understanding? Are you seeking acceptance and support?
What if you don’t get what you’re seeking? Sadly, this is often the outcome. Disclosure is hard. It requires a certain amount of fortitude, not just for the act of disclosing but for standing up to all that follows in the wake of it. Think it through, go slowly and enlist support from trusted people in your life.
Up next: An Evolving Sense of Self
67 thoughts on “Adult ASD: Disclosure”
The only reason I would not want anyone to know is so that I can get and keep a job. In all other situations, it is my bullshit filter. If people cannot handle knowing that about me, they are not my friends. It’s never the first thing I tell people, as it is a handful of information for an intro. But I don’t go many lengths to keep it a secret. I have no problem calling people out if they decide to patronize me. That is whey self-advocacy is about. But I do want people to cut me slack for social mistakes.
Another good time to disclose is when you hear people saying something ableist about autistics. It is a time for you to stand up not only for yourself bit also your people.
I think it’s brave of you to be mostly out. Using disclosure to sort out who your real friends are makes sense. I’ve had experiences where I both lost friends/decided I didn’t want to be friends with people based on their reaction and become closer fiends with people based on their reaction.
I’ve been following this series, eagerly awaiting this post, and it didn’t disappoint! Newly diagnosed, I am still figuring things out myself, and am still in the “this makes SO much sense! It explains me SO well!” stage. I appreciate the points you brought up, it’s given me a lot to think about. I’ve always advocated for autism awareness and acceptance, but now it’s much more personal. Lots to process!
It is a lot to process! I’m still figuring it out myself. I hope you didn’t find this overly discouraging, but some of the comments on this post give real life examples of how wrong things can go so I wanted to err on the side of extreme caution.
I’m glad you’re enjoying the series and feeling good about your diagnosis!
What’s the best way to deal with those awkward “not that autistic” responses? I recently mentioned Asperger’s in conversation (can’t remember why it was relevant, but it was) and I got the response “You must have it very mildly” and it sounded like she was questioning my diagnosis, then I felt like I had to justify myself, and of course with nerves my speech went completely to pot etc, then I was worried that it looked like I was putting it on XD
feministaspie, I’ve recently got told this myself. I told a friend that I suspected I’m autistic.He responded, “Really? You don’t seem autistic.” I countered with, “Well, what’s your definition of autistic?” We went from there. He had a stereotype of what autism was, and it had nothing to do with the characteristics at all, so I was able to counter them. I think having a lot of evidence (for ex. this blog, sites and articles on how autism presents itself in females vs. males) to support your diagnosis would really help. You could also relate any childhood experiences that show how you’re autistic-I think people know more about autistic children than they do autistic adults and this could be something they can relate to.
From what I can tell I think people mean this as a compliment like “you’re hiding it really well” and don’t realise that it comes across as dismissive. My stock response is that if you’d had to live or work with me for a while then this wouldn’t be at all surprising news. I also say that I can make a good first impression and fit in socially for short periods of time, but I find the whole process exhausting and can get easily overwhelmed, especially if there’s a lot of background noise, bright lights or other sensory challenges. (I find having thought of a stock response helps, if only to stop me accidentally lecturing them on autism until they eventually escape!)
i usually tell them they don`t know me that well, and they didn`t know me when i was younger. i usually try to be humourous about it, and assure them that there`s nothing to worry about, i`m happy with the progress i`ve made. or something like that.
I love both of the responses above. A stock answer that involves a mix of education and personal experience is a good approach, I think. Most people seem to think that “you don’t seem that autistic” is a compliment or a way to make us feel better about ourselves? I once shared my diagnosis in an online group and ended my disclosure post with “please don’t tell me that I don’t seem that autistic to you” and two people did anyhow. *headdesk*
I have to admit that I am very depressed at the moment about my disclosure. My life has become immeasurably more difficult since my diagnosis. I am now trying so hard to be less ‘me.’ Less of a social klutz, more aware of how I come across to people, less angry and trying to be more explaining so that people don’t mis-interpret my actions. I feel so tense and stressed around people now, much more so before. But my efforts to try and be better around other people, in light of my diagnosis, seem to be failing at every turn. I’m NOT making it easier for my family, in fact my husband has complained that now he knows about my sensory stresses for instance, he is trying to be aware of that for me and it is making HIM stressed too!
Thing is, I am glad that I know this autistic me. Alone, my autistic self is a happy, singing being. She is glad and grateful to be part of this community of people that she feels comfortable with, that she kind of understands. She loves her brain, the way it thinks and processes data, the beautiful, incredible world that it shows her. She is glad to be herself.
So for myself with me I am happy. For myself with people I am sad. It does not go well.
I’m curious how long it’s been since you were diagnosed? I’ve noticed that there is definitely an adjusting period with each person I’ve disclosed to. Sometimes it’s been brief and sometimes it’s been longer, but it’s always introduced some awkwardness and tension into the relationship. My husband struggled with some of the practical aspects of how to deal with accommodating me vs. asking me to compromise and at times we still need to revisit and renegotiate certain issues. It can be hard a partnership, especially if the non-ASD partner feels like s/he needs to be a caretaker or has to make significant lifestyle changes.
I think that differentiating between yourself alone and yourself with others is really important at this point, especially since you like yourself in your “natural” state. That autistic self that you like? What if you give other people a chance to know her? When I first learned about AS I was eager to fix everything about myself and went in search of social skills books, etc. But I’m leaning in the opposite direction lately, the one that says, “this is me, deal with it.” In doing that, I’m becoming more weird, but I’m also becoming more relaxed and happier. It’s a scary leap to make and sometimes I find myself pulling back and wishing for normal, but I keep nudging myself in the direction of “this is me” because I’m afraid that too many more years of trying to be someone I’m not will just drive me around the bend.
Thank you for taking the time and trouble to reply, and I am sorry that my last couple comments on your blog have been a bit dismal!
I was diagnosed 4 months ago, so yes, early days. I recently read a book called Apreciating Asperger Syndrome. I read the book in one sitting and it was quite a wonderful experience. The author is not denying difficulties, but she is tempering them with reflections on the positive side of being AS. I have found this book a great help and am referring myself back to it whenever I feel down again.
I DO like my autisic self. I am trying to speak less around NTs (think before I speak anyway!) as that seems to be when difficulties start and which I hope will be better for them, and for myself I am taking the time to do things that I like and that give me joy.
I don’t know how things will turn out with my husband, and it is comforting to read that you also had some difficulties there.
We’ll get there hey? Life is a process after all! 🙂
No worries! Sometimes we need to unburden ourselves.
Having positive resources to draw on and liking yourself and making changes that you feel are helpful all sound like great steps. Getting past the mourning and the hurt and pain is a slow process and definitely nonlinear.
I hope things work out for the best with your marriage, whatever that may be. My husband and I had some brief separations early on, because we found it so hard to live together. It hasn’t been an easy road by any means. I think having 27 years of relationship behind us when I got diagnosed meant that we’d already traveled a lot of rough road and have developed a kind of shorthand for getting through crises.
I told my boss in my last job because I thought it would help her understand why I didn’t get or do small talk etc in the big political environment I was working in. She was fine with it, but then pressed me to disclose to my coworkers as well so they would stop complaining about my lack of small talk/etc. I was scared but did it – and it was a nightmare. None of my coworkers stopped complaining. They justcomplained in other ways so that I ended up bullied. To the end my boss kept trying tto share WHY I was different to them, but truthfully people who bully differences don’t care WHY you are different. I ended up leaving the job, but I now also have ex-coworkers who are “outing” me to people they know in my new job, so I’m now faced with panic over whether I will lose this new job too.
Be VERY careful about job disclosure because once it’s out there, its out there to the people you told, and the people they will tell, and the people they will tell, etc – all informally through the grapevine and outside official confidentiality requirements. If I could go back, I MIGHT have told my boss, but I would never have agreed to tell my coworkers.
Disclosure depends totally on the field you are in, how small or gossipy it is, how bad you need an income (i can’t qualify for disability, for example, so if I can’t get.or keep a job I go hungry), etc. Think it through before you do it. It.may be very liberatig but it can also be a nightmare.
Thank you for sharing a “worst case” type of scenario. I’m sorry you had to experience this. It sounds like your boss was trying to make his/her life easier by pushing you to disclose and that sucks. I hope your new job goes okay and you aren’t adversely affected by the obnoxious ex-coworkers who are outing you.
I think you’re right about the field and the type of workplace being a factor in deciding to disclose. It seems like some fields would naturally be more neurodiverse and therefore more open to disclosure than others.
not disclosing, and not taking charge of yourself and your life means you are allowing the problems you`re trying to avoid to continue. you have to ask yourself how long do i want that to go on, and how much worse do i want it to get ? we are a minority. we will continue to be treated like a minority as long as we act like one.
disclosure is not just about yourself. we want people to treat us with dignity and respect. we have to act like people with dignity and respect. either way, it`s hard work. doesn`t it make more sense to be digging out, rather than digging in ?
I think that disclosure is a very personal decision and one that each person has to make according to their own comfort level and situation. It’s true that we’re a minority, but not everyone is in a place to be an advocate. It sounds like you’re very confident with your level of disclosure, which is something I really admire. As you said, it’s hard work being out and hard work not being out.
I also respect people who choose not to disclose because they fear being bullied, discriminated against, fired, or worse. The sad reality is that it’s often not safe for autistic people to be out. There are many autistic people who are working to change that and hopefully one day it will be safe to be out in all situations. But for many people disclosure is very much about themselves first and they have every right for it to be.
Really good post! This is a really tricky subject with so many factors – deciding when to disclose, who to disclose to and how, with different answers for different people in your life. You’re right that loved ones are unlikely to react positively at first. Family members might feel that this is a bad reflection on them for not having sought diagnosis when you were younger, or for not having recognised your distress, or may feel that this also inadvertently diagnoses other family members by implication (as the traits tend to run in families to some degree). Either way there’s likely to be an awkward period of adjustment unless the assessment was their idea or supported by them from the start.
Most of my friends reacted positively, but then most of my friends seem to be on the spectrum or suspect that they might be. In several cases people reconnected with me saying that they’d realised that I probably was actually interested in being friends and my signals that I wasn’t interested were probably unintended (very much the case). In a couple of cases people informed me that they’d been in love with me and going out of their way to tell me indirectly and I’d never noticed!
I know that workplace disclosure is especially tricky, and is something that I’ve thought about a lot and gone to great lengths to get right, because it really is absolutely necessary for me. I’m extremely good at my job but I struggle with the social aspects unless other people are aware and make simple accommodations for my traits.
I’m lucky to have had very positive experiences from my workplace disclosures. Although also lucky to live in a country where our equivalent of the ADA legal protections still applies to small companies as long as the accommodations are ‘reasonable adjustments’.
Back in 2007 I disclosed my autistic traits, albeit under the label of dyspraxia. I had an abridged version of my assessment report especially for disclosure to workplaces that outlined a strategy for working around my impairments and to my strengths, stressing that most of the burden would be on me but that I would need assistance from the team I worked with. It also explicitly mentioned the relevant discrimination laws that applied.
After disclosing to management and HR, I did a presentation to the entire department explaining in my own words what my challenges with nonverbal communication were and how I was working really hard on getting it right but needed people I worked with to ‘meet me half way’ and be clear and direct with me. The presentation included equal amounts of discussion of my positive traits like attention to detail, strong long term memory and being very suited to the job I was doing then (technical lead of a software engineering project). Management then got up and reiterated how important it was for everyone to work with me to maximize my strengths and that everyone should know that I was putting a lot of effort into getting things right, not being thoughtless or socially careless (as people had been complaining). This seemed to work brilliantly and I didn’t have any more social problems or complaints at that job after that. In fact I was much more successful and ended up with the job I have now as a result.
Then this year after being diagnosed with AS about 6 months ago I worked with with my local Asperger Service to get a similar abridged assessment report that again listed a set of recommendations for organisations and employers outlining what my ideal accommodations would be, all of which I’d already achieved with my current employers due to good self-advocacy on my part and a lot of luck. I then disclosed this to my employers with a carefully written covering letter that included Tony Attwood’s list of positive Asperger’s employment traits, which is ridiculously accurate for me, a suggestion that we get together to talk about it if they have any questions, and a reiteration that I love working with them and think the job’s perfect for me, as evidenced by all the accommodations already being met. I ended by thanking them for being brilliant employers. The response back was really understanding and positive, they weren’t even vaguely surprised by the news and said that it all makes sense and explained a lot of the qualities that were why they’d employed me. That was a few weeks ago and since then they’ve been even better at being clear and direct with me, making sure we always do our regular planning meetings and giving me materials in advance and written summaries after the fact.
I do think it’s very important that workplace or educational setting disclosure is done in a way that stresses the positives as much as the challenges and makes it clear that we all have to work together as a team and that the autistic person is already putting in a huge amount of effort to fit in and do the right thing. The best message is that we’re all (employees/students/people) different and all have our own strengths and challenges, but we all do our best when we work together. I think the best way to do this is to have the autistic person be very involved in the process of disclosure and to focus just as much at the things they are good at and how much better things could be for everyone with understanding and support from others.
Disclosure to peers shouldn’t be something that happens away from the autistic person and only when they’re already being seen in a negative light – i.e., not seen as an explanation or excuse for something going wrong, only given after someone else complains. There’s a lot of scope for employers or teachers or whoever is in charge of the group to do this in a way that causes damage, or to do it in a way that improves understanding and acceptance from everyone. The main goal should be avoiding stigma and increasing understanding and support, not alienating people further. If at all possible it should come when everything’s going well, not in the middle of a crisis (although I wasn’t able to avoid that with my first workplace disclosure).
If I remember correctly, Tony Attwood’s book and Asperger’s From The Inside Out both have good sections on workplace disclosure. I’m yet to read ‘Asperger’s On The Job’ but I’ve heard good things about it.
(argh, there I go staying up way after my bedtime writing a comment long enough to be a blog post of its own, yet again!)
Thank you for doing it! You’ve added a great perspective with a lot of practical tips.
It’s great to read that you had such a positive experience. Literally the experiences of commenters here have covered the entire spectrum from awesome to horrible to neutral.
Doing a presentation is an option I hadn’t considered. You’ve now reminded me that in a video I watched about AS in the workplace, some of the individuals had job coaches who did a presentation for their workplace to smooth their entry into the office environment. The coaches were also available on an ongoing basis to answer questions from coworkers or management. This is probably a higher level of support than most of us will ever enjoy, but another possible approach (even if instead of a formal coach, the presentation was made by a trusted ally).
I like the formal list of recommendations and strengths/weaknesses. That’s something that could be developed by any of us in conjunction with a therapist or support service, I would think. It’s concrete in a way that a verbal conversation wouldn’t be and would give the employer something to refer back to or revisit later. Also, the emphasis on the positive is very proactive.
I haven’t read Asperger’s on the Job yet, but it’s on my list. Along with so many others . . .
I don’t know if this would be comfortable for everyone or not, and it might feel a little patronizing, but for a long time, my field has used “strengths and needs” instead of strengths and weaknesses. I kind of like that it puts “hey, I have this need, if we want all this to work” right out there instead of labeling deficits a “weakness” right off the bat. To me, it’s the difference between saying “my auditory processing is really poor” and “I need for you to give me written instructions or give me a chance to write verbal instructions down.” I only disclosed ADHD in the workplace, but that worked out okay. I had taken early retirement by the time I self-diagnosed…I almost want to go back to the people I worked with and tell them what was going on besides ADHD that made me so “strange” and “hard to read.”
I like the idea of “strengths and needs” because it frames the overall picture most positively and in a concrete way. “Need” implies that something specific can be done, which I would imagine most coworkers/managers would be more comfortable with than the vague notion of weaknesses that need to be worked around or compensated for. It’s also a good fit with the social model of disability.
I wonder if most people realize that we find them just as strange and hard to read (or maybe moreso!). 🙂
Job coaches, specialist employee training for the entire department and other third party services are all definitely helpful and effective options, and the sort of thing that wouldn’t be unreasonable under the ADA or Equality Act for a medium to large sized organisation to produce.
It’s also important to remember that Human Resources departments can actually be very helpful in this respect. Their jobs are to make sure everyone works effectively, also to ensure that the company doesn’t break any employment or discrimination laws. They’re effectively a dedicated team whose job it is to make sure these things are done by the book.
The list of strengths and weaknesses and the content of the presentation was actually something I worked closely with Human Resources at the 2007 company to produce, even though at that point they only had a HR consultant working 1 day a week. The report I’d received recommending reasonable adjustments / accommodations was really clear that I needed to work closely with management and HR to decide what my accommodations would actually be in practice, then find a way to present these in a positive light to all my colleagues as that was vital to success. HR understood the legal ramifications and had some experience of disability accommodation, so took it all seriously.
I know that in large organisations, there’s often already procedures in place for HR to support employees with disabilities, and that promoting understanding and support from colleagues is often central to that. I think having a special report made for disclosing to employers that re-iterated how important this process of disclosure to colleagues was (with a mention of the law) most definitely helped that process along for me though.
It probably also doesn’t hurt to live in a country whose largest and best funded autism charities are focused on actually helping autistic people access services, support, employment, independence and legal protections. Here’s some of the things that the UK’s National Autistic Society provides:
I forgot to mention in my previous comment that along with the report for employers and the covering letter with the Tony Attwood list, I also sent them this leaflet:
You’ll notice that it says the following:
“Help other staff to be more aware. Evidence shows that if the person with an ASD consents to their condition being disclosed, then providing colleagues with information and guidance on ASDs can benefit both parties. Sometimes an employee with an ASD may find it helpful to write a document for other staff explaining how their ASD affects them and what kind of things they find hard. You may choose to distribute some Prospects Employment Service factsheets or other resources to your staff, or to provide staff training in disability issues in general, or specifically in ASDs. Prospects can help you with this.”
I’m not sure if there’s an equivalent American leaflet that tells employers that autistic people are brilliant employees given the right supports and makes genuine practical suggestions, but I can highly recommend having something like that available when disclosing.
The more I read about your experiences, the more I think this is huge:
“It probably also doesn’t hurt to live in a country whose largest and best funded autism charities are focused on actually helping autistic people access services, support, employment, independence and legal protections.”
The framing of autism in the US is almost entirely negative, which makes it easy to raise money and hard for actually autistic people to get seen as competent, valued workers. Do you know what the unemployment rate in the UK is for autistic people. In the US, it’s routinely quoted around 80-85% and underemployment is a big problem among those who do have jobs. I think the actual rate, might be lower if we were able to take into account undiagnosed autistic people but it would probably still be grim.
There are some good local/statewide organizations here that provide job coaching, help people get and keep jobs, etc. but not nearly enough. There are also ASD-friendly employers and some that are considered good fits for geeks (which is perhaps code for autistic in some way) but again not enough. I think changing how we talk about autism in general is the first step toward changing how well autistic adults are accepted on a broader basis. It’s heartening to see a country with a much more positive outlook/atmosphere.
According to this article, it’s 15% full-time employed, 9% part-time employed. So 76% without paid jobs, while “four out of five people with autism on out-of-work benefits say they would like to work, with the right support.” So most certainly still high degrees of autistic people who want jobs but are unable to get them.
This article also says “59% of adults with autism [told NAS] that they don’t believe or don’t know if they will ever get a job” in the current economic climate, but NAS is campaigning to help work prospects:
So somewhat similar statistics, it looks like, but perhaps a more proactive or positive attitude in the UK. I’m really not sure how employable I’d be if I had to work for someone else. I’d likely be underemployed.
The UK also has general disability charities that campaign to improve the opportunities of all disabled people. I have a friend who used the employment services of the charity Scope to get a corporate work placement, that placement included someone with autistic traits who had a PA to assist with executive function.
I think we could all use a PA to assist with executive function! 🙂 I’ve had PAs in the past and have delegated EF-type tasks to them. They also learned fairly quickly that there were certain things they’d need to remind me about and I was fortunate to find people who did that without a lot of fuss.
Thanks for all your information. Really appreciate your suggestions. 🙂 Can you tell me which of the books written by Tony Attwoods lists the Positive Asperger’s Employment Traits? Although, I’ve put together a list myself from reading other books, I wanted to see if there was anything else to encourage me within my workplace setting.
I haven’t had a chance to check a print copy, but a Google Books search says it’s in The Complete Guide to Asperger’s Syndrome on page 295.
Here’s the list:
easily able to identify errors
in possession of a sense of social justice and integrity
likely to question protocols
attentive to detail
original in problem solving
likely to thrive on routine and clear expectations
There is also an equivalent list of possible challenges and weaknesses, which I would tend to keep for personal reference rather than use it during disclosure.
Incidentally, I took part in a relevant autistic spectrum employment Q&A (of an autism employment specialist who’s written books on the subject) hosted by Talk About Autism last night:
My contributions are from ‘Nat’.
I just skimmed through it but will go back later to read in detail. Looks very interesting/informative. Thank you for sharing the link here.
Thanks again for this thorough list. As I’m looking at it once again most of my aspie strengths doesn’t seem to be required in work any more. Maybe years ago, but the culture changed somewhere along the line and I didn’t pick it up! My employers kept on saying one thing and their actions/behaviour was saying another. This I couldn’t understand (long before my diagnosis) and even though I asked colleagues, they too couldn’t give me a straight answer. This is what I cannot understand when authors of some books talk about us not being able to read body language. I think many of us can, its the processing of reading and listening at the same time that throws us off balance as usually neither what is said, nor their behaviour tallies up. I think because they are not wired our way, and find it terribly difficult to tell the truth – its them who have the problem and not us! Also, the fact that many tend to listen with their ears only tells me so much of how limited their own communication style is.
However, it is good to hear that you have wonderful and supportive employers. 🙂 It goes to show that there are good employers out there who do not focus on their selves but on what would benefit their employees. 🙂
Musings. You are doing an absolutely fantastic job with this blog. Thank you.
My wife diagnosed me as Aspie years ago, and that has saved our relationship, since it gave her more of an understanding of why I behave the way I do. As much as I thought I had accepted that I was probably on the spectrum, it was not until this weekend that I truly have understood that I am Aspie. It has been an intense weekend full of power reading Simone’s book, almost all of your blog, and some other online resources. It is my nature, being Aspie, to just Lurk and not comment to you. But you have created such a loving and supportive environment that I feel I must honor you by responding in public. Thank you for this blog and giving us so much of yourself. You are doing an amazing job of moderating these discussions.
I think I am still a bit in shock that being Aspie so completing describes all of me, even aspects I thought were unrelated, such as, among many other things, sensitivity to sound, problems with auditory processing, and digestive issues, that I am still struggling with this transition into accepting this label. I know I am the same person that I was last week, but to echo something you said in one of your insightful comments, I hope to be more forgiving of myself, more compassionate of myself, and that a heightened awareness will help me better navigate the situations that trigger responses from me that would later require that self-compassion and self-forgiveness, instead of that familiar self-loathing. So much of what you say resonates so deeply with me that I can no longer doubt that I am Apsie, too (a 33 on the test is further support for the conclusion, and, coincidentally, I will be 42 next month).
Further incentive to face this diagnosis was an overheard conversation from my four your old son to his mother last week asking, “why is daddy always mad at me.” I know my facial expressions and body language often miscommunicate my feelings and intentions. I absolutely do not want my son to receive the wrong messages from me. I hope I can be more sensitive to what I am communicating, and I hope your book suggestions to my wife, such as “all cats have Aspergers,” will help our son to be more forgiving of my miscommunications and more trusting of my attempts to communicate my love for him.
Since I may not muster up the comfort to post more in public like this, thank you again for your boldness and your willingness to communicate so clearly how many of us feel and see the world. For me, I no longer want to be “normal,” and after a very long and bumpy road fully embrace who I am. But it is still very worth while to work out those compromises that help bridge the gaps between differences, and those that will allow better communication and more fulfilling lives with those whom we love.
Thank for delurking and leaving such a wonderful comment. When I started writing this blog I hoped that it would become a place for people to share their experiences and it’s far exceeded anything I’d imagined. So much of that is thanks to readers who generously comment and share their stories in response to my ramblings. It’s a wonderful give and take.
It sounds like you’ve had that “aha” moment and are ready to move forward in a way that will be positive for you and your family. I’ve found that compromising is a big part of making AS-NT relationships work. Like you pointed out at the end of your comment, it has nothing to do with being “normal” and everything to do with strengthening our relationships with the people we love.
Regarding your son, once you’ve talked with him about why daddy is different, you might also try giving him permission/encouraging him to ask you what you’re feeling. That way he wouldn’t just assume you were mad and you wouldn’t have to be super self-conscious about your facial expressions all the time, which might get exhausting.
I have the same problem with facial expressions. People often think I’m bored, angry or confused when I’m not. Instead of making assumptions, my husband has started asking “what are you thinking” or saying something neutral like “your shoulders are hunched up.” This gives me a chance to check in with myself in a nonthreatening way and let him know that I’m not _______ (negative thing he is likely assuming).
So maybe encourage your son to ask what you’re thinking/feeling. You could even use one of those emotion/face icon poster that they use in ASD social skills classes as a visual representation of how you feel. I bet he’d quickly learn to read you or at least readjust his concept of your “mad” face to be a “thinking hard” face or a “chilling out” face or whatever neutral phrase you choose. My daughter is very adept at reading me emotionally and though we sometimes still have crossed wires occasionally, she is a fluent in translating aspie into NT. 🙂
This is a topic I know I will face a lot as an OT (and I have dealt with this myself) when other individuals with ASD will approach me. So, I will give a couple responses.
1. I confidently disclose it with OT practitioners and students online and in OT conferences. I figured it is something that they got to know about me for a few reasons. First, I want them to accept me as a peer first, and a person w/ AS second. Second, I know that I can actually HELP some of them in their practice. Third, this disclosure has since opened some doors in OT.
2. With family, my parents know and my sister sorta know. Outside of that, it’s not really mentioned. The only time I will mention that is if I have done something great in OT in autism.
3. With church folks, not all of them. I think I only told a few people formally.
Now in terms of education… OT folks don’t really need them because I am also providing the education and/or they already have the education from school.
But with others with ASD… this will depend on who they know. If they have a helping professional or two in their families or among their friends, they can be great practice partners before they choose to disclose to other people they might not be so confident in. Otherwise, I think it’s important for them to evaluate their live situations and rank the importance in terms of whether disclosing will make a positive difference. After that, then it’s important to figure out how much these people might know about autism (though it’s important to error on caution).
Thank you for providing such a detailed breakdown. I can see how OT practitioners and students would be both open to your disclosure and benefit from it.
You make a great point about practicing disclosure with safe people first to gain confidence. I think that’s what I’ve been instinctively doing so far.
I just discovered your blog and am very happy I did. It’s easily one of the best Aspie-blogs I’ve read (and I’ve read a LOT!). It’s so comprehensive and addresses many topics of interest to me, including marriage (I’ve been married to an NT, who’s very much emotion-driven, for over a decade now), adult diagnosis (I was diagnosed 1 1/2 years ago, at age 38), and the topic I’ve been pondering lately, disclosure (I’ve told only immediate family, and they are in denial & avoidance mode).
The posts of yours I’ve read so far have been extremely insightful and I look forward to reading many more … and as soon as possible. Being an Aspie, patience is not one of my stronger traits. 🙂
Thanks for such a great contribution to the Aspie-community. I’m a blogging newbie but if you ever want to check out my blog, it’s undercoveraspie.wordpress.com.
Thank you! What a wonderful thing to say. I’m still struggling with disclosure in a big way. I think it’s the irretrievable nature of it that scares me most.
Thank you for the link to your blog. I’ve added to my reader. I’m always looking for new blogs by other adults on the spectrum. 🙂
I was looking for answers as to whether I should disclose and when (newly diagnosed) and I think the biggest thing I took away from your post is to understand my motivations for disclosing in a particular situation. I’ve been at my current job for over a year, so it seems they accept me as I am, though I do score poorly on the “communication” part of my evaluations. That still hasn’t stopped me from getting bonuses and such, so I think I will just keep my mouth shut. Anyway, aside from friends, I need to think about when it matters and when it really doesn’t. Thanks for the help!
So glad you found it helpful! It sounds like you’re doing well at work, so yes, probably best not to say anything right now. 🙂
And now it all went to hell.
Due to the fact I went nearly nonverbal in school today, which ended up in a panic attack, i HAD to disclose, which I REALLY didn’t want to and wasn’t prepared for it so it really, really didn’t go too well.
And oh, the ignorance, the IGNORANCE of people.
I’ve been crying on and off for about 8 hours now.
Oh, I’m sorry to hear that. Involuntary disclosure isn’t good. 😦
Glad to have someone understand. It also led to disclosure to my friends though, which worked out perfectly, which is nice, but I am still dreading going to school.
– being told that my boyfriend might need surgery because some doctor’s are idiots
– being ridiculed for my way of thinking
– being cornered by three girls about behaviour that A I wasn’t aware of and B wasn’t their problem
it just was over and I couldn’t deal and got nonverbal. But of course I’m supposed to talk. And to calm down. And I really have to work on my self-censoring, because stimming openly may have helped me, but I just repressed it all because I was bloody scared.
I at some point snapped:
Imagine you are mute. And you’ve got a terrible stomach ache. You don’t know sign language. Your doctor doesn’t either – and is completely convinced that the problem are your lungs, and you can only communicate through grunts and gestures and he still doesn’t get the message. Now feel exactly like that for about 90 per cent of conversations in school. And now tell me you could always keep calm and I’ll call you a liar.
This might be a fairly long reply. I hope that isn’t a problem.
I’ve suspected (known) for several years now that I have Asperger’s. When I initially read up about it, I only read about the main symptoms, the ones that’s mostly listed on Wikipedia and similar places. I didn’t really know or understand just what a large impact it had on my life, at that point. When I started to date my current girlfriend, I told her about my suspicions (knowledge) of my Asperger’s, but it didn’t consist of much more than just giving her the list of symptoms as can be read on Wikipedia, because that was basically the only knowledge I had of it at the time, again not knowing just how much it really affected me. As a result, I can only assume she thought I was “normal”, with maybe a few quirks here and there. The subject never really came up, only in passing by. I’ve never told my parents or any of my friends (the little to any I have) about this.
Recently my father told me his 8 year old son he has with his second wife, has Asperger’s. This caused me to tell my father and his wife about my own suspicions (knowledge) of myself. My father was very understanding of the matter, having heard and read about it somewhat because of my half brother. Before this I had started to read a little more about Asperger’s and understanding a little more about it, but by then I still haven’t really discussed the situation much further with my partner. After my father told me about my half brother, I decided it was time I told my mother. I emailed her a link to some descriptions, which I thought explained it fairly well on the surface of it all. I spoke to her about it afterwards to which she said she quickly scanned through the website and agree that it all makes sense, but she still sounded a little sceptical, like she didn’t quite believe it.
I’ve since amassed some information about Asperger’s and the deeper connections and how it affects me. This, for the most part, led me to your blog, which I find endlessly fascinating and helps describe so many things, so well. I’ve given some of the information to my partner to read, hoping she would better understand why I am the way I am and why I do certain things the way I do, but she seems a little uninterested in reading anything more than a single paragraph about any of it. One particular set of links I sent her explained somewhat about sensory overload and meltdowns, which she didn’t read, at all. Yesterday I had somewhat of a meltdown and she didn’t understand what was going on and thought it was something she had done, even though she was just sitting next to me and doing, essentially, nothing. If she had read the links I sent her, weeks ago, surely she would have understood what was going on and what was happening.
Am I wrong in expecting her to do her own research and reading up on Asperger’s in an attempt to better understand me? Or should I just explain things to her as we go along? This, to me, feels sometimes like she thinks I’m just making things up to suite myself or for my own convenience. I mean, I could be making up anything I wanted to my benefit and just tell her, “oh well, it’s the Asperger’s”. I would rather prefer she be knowledgeable on the subject and understand why I like some things a certain way and others not; why I do certain things the way I do; why I like to be on my own sometimes, and that it’s not because I don’t love her; why I struggle to show her that I love her the same way she shows it to me; why I do and think about certain things the way that I do. Should I give her heaps of information (a lot of which comes from this blog) to read about, or allow her to read up on it herself, or should we just deal with it as we go along?
No worries about long comments. I enjoy them and it helps me to understand where you’re coming from in a case like this where you’re asking for input.
I think the people who know us well are often the ones who need the most time to adjust to the idea that we’re on the spectrum. I’m not sure how long you’ve been with your partner or what stage of the relationship you’re in so I’ll answer generally. At first, my husband wasn’t that open to the possibility of me having AS. He’d always known me as me and was fine with the way I am and didn’t really see how Asperger’s affects me because we were both so used to so many of my quirks. So he didn’t take it especially seriously at first and I had to keep putting stuff in front of him to read. Eventually when I started blogging, he grew more interested, perhaps because I was asking him to read specific things that I was writing about me and our family rather than general AS-related topics.
Maybe the best approach for you right now is to explain things to your partner as you go or when you feel the need to. She may be more interested in how each thing affects you and your relationship specifically than in reading general information about AS. She also may need time to accept this new revelation at her own pace.
Honestly, my husband has never read or researched a single thing about AS on his own and I’ve realized that while I have a special-interest level interest in autism, he just doesn’t and likely never will. He’s fine with me telling him what I want him to know, as the need arises and I’ve learned to be okay with that.
I know that it can be frustrating when you partner isn’t quite “getting it” as much as you’d like, but try to be patient. It sounds like you want her to understand you as a way to improve your relationship and that’s really important. Just take it slow and steady for now.
I’ve just re-read this post and all the really useful comments, because I was diagnosed a few weeks ago – a very late diagnosis, a relief, but I imagine it will take a while to really come to terms with it. I am just drafting a document for work colleagues, and have found it difficult to keep on track – putting everything plus more into it – so this has really helped get my head in order! I am also going to paste the latest musings post (‘Do The Thing’) which I loved! into it as a link because it really explains differences in thinking in an original and positive way.
Can I offer you a hug? I am all nervous because my official diagnosis – if I get it – will officially happen Tuesday next week, so I kind of feel like hugging you because I will probably face similar problems afterwards.
Good luck on Tuesday! You must be terribly nervous right now. I remember those painful days of waiting just a bit too well.
Thank you so much! I will probably write a blog post about the appointment and the testing and all that – if you’d like, I’ll drop you a link as soon as I post it. I am jumping from “Totally nervous and a bit scared” and “totally positive” and back all the time right now.
Yes, please do link from here when you post. I always welcome links to more resources because I know that a lot of people read all of the comments on posts and follow links to additional information when it’s available. 🙂
Thank you Svenja, I love virtual hugs! Sending hugs back for your diagnosis on Tuesday, I hope it goes well. It’s scary waiting, my thoughts were all over the place, yo-yoing from high to low all the time. I’ve been keeping a diary (that’s all over the place as well!) just writing my thoughts about things when I’m feeling worried or things that I read – it’s not neat and I’d hate for anyone else to see it – it’s incoherent barely legible scribble – but I’ve been using it for nearly a year now and it’s really helped.
My initial request for a referral to a specialist centre diagnosing women and girls wasn’t funded and I was redirected via the local mental health system – I was very concerned about this, but the clinical psychologist who did the assessment seemed very experienced, and gentle, and that was a relief. I have a vague feeling that he was an aspie!
I shall remember the hugs on Tuesday =)
Lucky me could decide where and by whom I wanted to be diagnosed. Though the waiting lists are horrible – I found a relatively new place, which meant I only had to wait three months, but after they hosted a big conference, they got much more widely known – my poor boyfriend made his own appointment at the same place after the conference – end of March, maybe – and has his appointment in October! Most other places around who also have experience with adults have 6 to 18 months of waiting time for an initial appointment.
And yes, I also find documenting my thoughts very helpful.
Congratulations on your diagnosis and on having the courage to disclose at work. I hope it goes well for you. Doing lots of preparation is probably a good thing and I’m sure your colleagues will appreciate the effort you’re putting into it.
And yes, it takes time for everything to settle, so be patient with yourself.
Thanks for reminding me to be patient now, it is something I’ve been learning over the last year. I’ve been talking to my manager about it for a few months because of certain difficulties I’ve had at work. I am very lucky and work in a generally supportive and aware environment, but it’s still been very up and down for various reasons. I don’t think it will be that much of a surprise to colleagues as I made a previous disclosure about a related difficulty last year, even so, I am still apprehensive about it and desperately want to get this bit right. Reading the post from ‘Quarries and Corridors’ above re working with the ‘local Asperger Service to get an abridged assessment report that listed a set of recommendations for organisations and employers outlining what my ideal accommodations would be’, is a great idea, as my report just outlines my difficulties and gives a diagnosis, which has left me trying to work out what I need to ask for in the way of help and support – if this makes sense…
I believe some comments people make (who think they’re not on the spectrum themselves) seems autistic. 🙂 What I mean by that is they too find it difficult to imagine anything else apart from what they perceive Autism / Asperger’s to look like in their own minds. I have other hidden disabilities and I get similar responses ie, “And you look so well!” I used to wonder what they expected me to look like. Then it dawned on me their minds were feeding off one particular picture, and if we didn’t fit the picture they had in their heads therefore, in their opinion we’re not what we said we are.
The other reason I’ve come up with is often Allistics (I like this word than NT’s) think they have to say something in response to what we shared with them. They aren’t used to people sharing personal things to them either. As most talk about superficial stuff. That’s why they talk so much. Their brain’s often not engaged with their mouth!
My last revelation is when they hear us reveal these things their brain wiring think we want to be comforted hence their reply being so patronising and off mark. I was excited when I finally got an appointment for my assessment. All my “friends” said, “You don’t want to believe that do you?” Afterwards, their replies were, “That’s great!” This always puzzled me. Now I understand they have Short-term memory. From one minute to the next they’ll hardly remember what they’ve said. However, on a positive note, our strengths is their difficulties and their strengths is what we find difficult. Plus’ about being us is: We are more acceptive with people who are different because of our own differences. Allistics, may not yet know of their own as they’re not used to be so open as we are and it’s deemed in their minds as a weakness, although its actually a Strength! As long as I know who I am continue to love me to bits.. That’s all that matters! Sorry for such a long reply.. I’m happy that I said it! :))
Yeah, the “god, how horrible”-reaction is something I experienced a few days ago.
I had a call for my birthday from someone I was once very good friends with, though we now rarely talk. When we do, however, we usually slip into a comfortable pattern of open conversation, so naturally I mentioned my appointment for being evaluated, and she was like “I hope your tests come up negative” and I answered “NO, I hope they do diagnose me with Asperger’s” and she asked “But why would you want that?” When I said a few things she was …. confused, to say the least. She did try her best to understand me – which I was very impressed with, because I had less nice reactions from people I had previously felt much closer to – but it totally broke her usual thought pattern that someone would WANT to be diagnosed with something that is considered a “drastic developmental disorder” – to directly translate the phrase from the wikipedia page in my mother tongue.
But I do agree that there are a lot of allistic people (and a few people I actually suspect to be autistic as well) who are much more short-sighted than that.
Either they are still too busy pitying you to notice you are actually happy with your (in my case so far self-)diagnosis or they do a 180, going from “Oh no” to “That’s so great” because they try to accomodate your feelings somehow and don’t realize they seem like they suffer from short-term memory-loss.
The same thing happened to me, from my sister, her words were ‘lets hope it’s not’, and I replied, ‘I hope it is because it makes sense of my life’. But her comment did make me feel ‘wrong’ in some way, and very sad, because someone so close to me obviously didn’t understand, and because she had been diagnosed with ADD recently. But a few months later we had another conversation about it and she did seem to understand, and even started to identify similar traits in herself.
There is this blog that I have been reading for a while, of a mother with children among which many have some type of “problems”, so to speak, ranging between ADD and Asperger’s and I think one was OCD, and I think I recall them mentioning that there are theories that ADD is part of the Autism Spectrum as well, the “lowest end of it”, and I think there might be something to it, which would also explain why many people get misdiagnosed with ADD when they, in fact, have Asperger’s – if someone has developed a lot of coping mechanisms, they might “pass off” as someone with ADD.
If someone, by the way, remembers where that blog is, I totally forgot the name and I checked out so many different blogs at the time that going by my internet history has not worked, either – I think she has food-related nicknames for her children, and that she has many of them, andI recall that she complained that a few people accuse her of having Munchhausen by proxy – so if you could tell me, I would be grateful =)
Definitely don’t work at non-ADA businesses. I did the work well, handled the phone calls and customers, was an exemplary employee, no signs of “disability”, but I was fired because I wouldn’t let the boss’s 34-year-old son pull my hair, and there was no legal action I could take beyond an assault charge when he tried to hit me immediately after I told him “don’t pull my hair”. Also, don’t work with people who abuse drugs. They be crazier than you.
Coming out as Aspie would (hopefully) give people a reason to ease up on social pressure rather than crusade to put me under more pressure to “fix me”. But I’m a mother. I’ve already had one social worker accuse me of being a child abuser because I’m body shy (somebody, please, explain the logic to me that I neglect and harm children through the act of keeping my clothes on). I don’t need another “official” using Asperger’s as an excuse to completely take my son away with their biased misconception.
If I knew all what I knew now about disclosing I wouldn’t have done it. However, things came to a head for me in work a few years ago. I told my employer and and job coach at the time that I had suspected I had Asperger’s and even though I used to communicate with them before in my own way the Job Coach I had began talking to me as if I had an hearing impairment. It’s almost as if they don’t know how to deal with other people’s differences even thought they verbally say so over and over again.
Just today, someone supporting me with another hidden disability began talking to me. What started out as them being interested to know soon became more like the third degree. Comparing me with women or girls who take a long time to get ready to go out with their friends socially and began asking hyperthical questions to see if he could get a better understanding of my difficulties.
I was okay speaking to him up to a point and I have begun listening to myself that much more and teaching myself a bit of their lingo to get myself out of situations just as they do. As I was talking I felt a slight twinge within – ever subtle within me. I took that as a sign to end the conversation as it was also draining me mentally.
I’ve come to realise that most of non autistic’s conversation is so trivial that’s why most of them tend to ask “What’s going on in your life?” I used to share loads thinking they were interested. I find most mainly interested in my ideas. So, I’m also teaching myself to turn the question back into them. If they then have nothing much to say – neither do I. Otherwise, my reply is “A little bit this an that! You know.” Their type of small talk.
A word of warning – anything important to you – do not share as that’s what they don’t do either. Face the mirror at home and practice talking out loud as if you are in conversation with a colleague in work. Mirror them as they mirror you. And find other people who you can share your interests with who give to you as you give to them.
I picked up a copy of a book called: Autism, Discrimination and the Law – A Quick Guide for Parents, Educators and Employers by James Graham. What I liked about this book was in the section covering Advertisements and applications in italics it says: “Not providing clear information and language, free of abstraction, on application forms could be seen as discriminatory.” After the author wrote out a few reasonable adjustments that could be made for a person with autism at a job Interviews, again in italics he wrote: “Not adapting the interview to provide more concrete ways of eliciting information from an applicant could be seen to be discriminatory.
I’m finding that when employers refuse to make a change for us its usually because they think its hard work for themselves. They have the lovely words, however its not backed up with a positive action (behavioural change) as they really don’t know how to put themselves in another person’s shoes.
Thank you for sharing your experiences here. It’s so helpful for people to have real life examples like yours to see how challenging disclosure can be, regardless of what employers and others say their policies are.
It has to be hard to be constantly having to prove and define yourself to the people in your workplace as a result of their ignorance and biases.
And I’ve found the same thing – whatever a person asks you about, give a brief answer and ask the same/similar to them because that’s what they’re likely really angling for. “How is my lunch? Great, but tell me how is your lunch?” And then wait for the six paragraph story about the new recipe they tried or the hassle they had putting it together because their partner was reinventing the wheel in the kitchen that very morning. 🙂
Ha ha ha! That’s so true. To be able to connect with others who experience the same / similar things to me makes me realise I do fall in the ‘normal’ category of being uniquely different! 🙂
I identified with the following verse when I laid my eyes on it several years ago and I felt it explained and understood me as a person living in this world.
“But we have this treasure in jars of clay to show this all-surpassing power is from God and not from us. We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed.”
2 Corinthians 4:7 & 8.
We’ve been created with a double / triple portion of inner strength sown up inside that we have personal access to. That’s what keeps us going. Determination! Giving up isn’t an option even though we’d like to. So we press on.
This is a very interesting article, thank you very much!
I’ve been diagnosed with Asperger’s in July and have disclosed this to a few friends – to some of them already in the questioning stage, because I really needed someone to talk to about all this, and to some during a discussion on autism. None of them reacted negatively, nor really astonished – I must appear much weirder than I think I do…
Basically, I first told a very close friend: “I saw a video from a girl with Asperger’s and I have the impression she’s talking about me. And I had a colleague who used to say I seemed somewhat autistic.” To what he answered he had asked me if I wasn’t a little autistic when we met! He was a huge support for me all the time, so I’m really glad I told him.
I also accidentally disclosed to a guy I am dating right now, because my computer bugged and posted a test result into the chatroom we used… Though I didn’t intend to tell him, it finally was a good thing, as I made him read something about AS and he’s very understanding and supportive.
Now the big questions for me are :
1) disclosure to my parents, as I have no idea how they would react and I’m very afraid of a negative reaction;
2) disclosure or partial disclosure at work or at least to the medical service – I feel exhausted all the time because of the need to compensate so much and I’ve already had problems linked to social skills, so I think I can’t go on without some accomodations. But I’m afraid to be stigmatised and I don’t even really know what kind of accomodation I’d need. It’s really difficult to decide wether to disclose or not in such circumstances…