Accommodations make life easier, but as Otterknot pointed out in a recent comment, asking for accommodations often sounds simpler than it is.
Why is that? Why are we so reluctant to ask for something that will improve our quality of life, our relationships or our ability to succeed at work or school?
The biggest obstacle is often disclosure. Asking for an accommodation or support means disclosing that we’re disabled. Accommodations are for disabled people, after all. For those of us who have spent a lifetime instinctively trying to pass as nondisabled, it can be hard to make the mental shift to being openly or even semi-openly disabled.
There is also the question of whether the other party will understand the nature of hidden disabilities. Unlike a visible disability, a hidden disability carries a certain burden of proof. So we hesitate, wondering whether the other person will believe that we really need this particular accommodation or perhaps dreading the amount of explaining and/or convincing that will be involved.
Finally, there is the specter of self-doubt. Do I really need to ask for this? Can’t I just continue to suck it up and power through like I always have? Maybe if I work harder, I don’t really need any supports.
For late-diagnosed autistic adults, this is a big hurdle. Often, we’ve gotten this far in life by doing our best to get by. Not only are we inexperienced at asking for accommodations and supports, we’re also often inexperienced at recognizing when we need them.
We worry that we’re imposing an unnecessary burden on others by asking for “special treatment.” We feel conspicuous and singled out for having atypical needs. We’ve spent a lifetime working hard to blend in and suddenly we’re being told that it’s necessary to proactively announce our differences.
Building a Foundation
As Otterknot pointed out, many of us have to do some foundation work first before we can feel comfortable asking for accommodations. Here’s what I’ve been working on:
1. Recognize that I have needs, that my needs might be different from those of others and that’s okay. I wrote about this a bit last year–about how hard it is for me to identify my wants and needs, let alone seek out ways to meet them. I’ve made some progress in this area, but it’s something that I constantly have to work on bringing to the forefront of my consciousness.
2. Admit that denying, dismissing or minimizing my needs is more harmful than helpful. My instinctive reaction to needing something, especially something that I think will make me appear “weak,” is denial. I assume that by “not making a fuss” about something, I’m doing everyone involved a big favor. But I’m not. Because it quickly becomes evident when I’m struggling and my struggles can have a ripple effect, resulting in unpleasantness for others.
3. Remember that other people want to help. I’m very self-sufficient, often to the point of ridiculousness. I’m working on asking for help and/or accepting it when it’s offered. Accommodations aren’t always help per se, but the underlying principle is the same.
4. Make peace with the discomfort and self-consciousness that being different can cause. Yes, sometimes receiving accommodations or supports will make me stand out from the group. Yes, it will confirm to other people that I’m different. Yes, it will (rightly or wrongly) make me feel like I’m making a concession to my disability. I’m slowly getting better at being with those feelings, even though they still make me uncomfortable at times.
Mostly, I try to remember that by asking for a change in a situation, there’s a good chance that I’m improving the odds of success, not just for me, but for everyone involved. For example, at a big family gathering last year, I felt myself on the verge of overload. I’d spent two days surrounded by people and just as we were all arriving at the rental cabin for a big afternoon cookout, I felt a sense of panic set in. Too many people, too much noise and commotion.
In the past, I would have simply dealt with it. And by “dealt with it” I mean ignored my feelings and ended up in a classic shutdown before the afternoon was out. Instead, I told The Scientist that I was feeling overwhelmed and panicky. Actually, what I said was, “I need to get out of here. Now.”
He brilliantly deduced the overwhelmed and panicky part, and suggested that we go for a walk. We spent about an hour walking along a stream nearby and being quiet. When I felt ready, I told him and we went back to join the cookout. The hour of quiet allowed me to enjoy the rest of the afternoon and avoid the shutdown that had felt inevitable earlier.
Not only was my day better, but The Scientist (and other family members) didn’t have to spend the rest of the afternoon worrying about why I was feeling miserable.
How to Ask for Accommodations and Supports
There’s no formula for requesting an accommodation or support. Instead, think of a continuum ranging from a casual to formal requests. Often, it’s possible to ask for a minor change in a situation without disclosing your disability (if you prefer not to). Here are a few examples of places along the continuum:
Casual request: This works well with friends, family or acquaintances in situations where a minor change will make a big difference for you and have little impact on the other person. For example, you’re meeting a friend in a coffee shop and they choose a table right next to the barista station. Knowing that the noise from the machines and constant chatter will make it hard for you to focus on the conversation, you say, “Do you mind if we sit at that table in the corner? The noise from the counter will make it hard for me to hear you clearly.” Or “hard for me to concentrate” or “hard for me to focus on our conversation.” Whatever makes the most sense to you.
Although this is phrased as a question, most people will assume it’s rhetorical and go along with your request, unless they have a competing need (i.e. your preferred table is next to a cold drafty window). If you want to be more assertive, you can say, “Let’s sit at . . .” or “I’d like to sit at . . .”
Firm statement: A statement of your needs is appropriate in situations where there is an imbalance of power or you expect to experience pushback. For example, you’re in the car heading home from a long afternoon of shopping and your partner/parent/friend is feeling chatty while you’re feeling overloaded. To prevent yourself from melting down, you take out your headphones and say, “I’m feeling overwhelmed and need some time to chill out so I’m going to put on my headphones and listen to music until we get home. It’s nothing personal and once I’m feeling less anxious (overwhelmed, tired) I’d like to hear more about __________.”
In this situation, asking the other person to stop talking may be perceived as rude or offensive. Phrasing your statement as being entirely about you and what kind of self-care you’re going to engage in reduces the chances of a misunderstanding. The other person may or may not be bothered by your actions but at least you’ve attempted to explain it in a way that doesn’t blame them (i.e. they’re being too noisy) and have offered to resume their preferred activity once you’re feeling better.
Formal request: In a work or school situation, you may have to make a formal–perhaps written–request for supports or accommodations. This will also involve disclosing, if you haven’t already, your diagnosis to your boss, manager or professor. I wrote about making formal requests in the Disclosure post from the Adult Diagnosis series, so I’ll refrain from repeating myself here.
Practice, Practice, Practice
I’m still a novice at asking for accommodations but I’ve been making a conscious effort to practice and it’s slowly becoming less difficult. One thing that’s helping me along is the steady deterioration of my language skills. For the first time in my life, I’m feeling truly disabled. Not social model disabled or medical model disabled but just plain “I can’t do this thing” disabled. That’s forcing me to think seriously about the types of supports and accommodations that will continue to allow me to pursue the things I enjoy while not beating myself about how much I’m struggling. And that’s probably a whole other post.
Musings of an Aspie 
This is a timely post. I made my first call to Disability Services at school this week to see if one of their counselors could help me with organizational supports. I’m having to acknowledge to myself that my ability to manage all of the external structures I’ve created to cope with executive dysfunction completely falls apart when my anxiety hits a certain threshold. Also, I had to have a disclosure conversation with a professor. Those are still difficult, even with the scripts I’ve developed over my years of graduate study. PhDisabled on Twitter had a useful conversation with their followers earlier this week about disclosure and seeking academic supports.
I hope things go well for you with the Disability Services office. When I went to the one at my university prior to getting diagnosed, they seemed clueless, though I was still pretty clueless myself. Informed self-advocacy feels like a prerequisite to even getting the conversation started.
Me too. Rarely do these things happen one at a time, although apparently campus mental health services (where I’ve been going) is supposedly familiar with working with Disability Services. We’ll see.
I’m also in the process of looking for a lower cost clinician who identifies adult women with ASD, so all of the self-advocacy has been happening lately.
One of the hardest things for me is when someone seems to be accommodating but really isn’t. For example, I have to wear tinted therapy glasses in the evening, due to my hypernychthemeral syndrome and I couldn’t see red (or whatever color it was) markers on the whiteboard in my evening class. I just kept my mouth shut, figuring things by context, but then the professor asked me something, relevant to what was on the board and I told him I couldn’t read the board because he was writing in a color I couldn’t see with my therapy glasses.
It seemed like he was great about it, “oh, sorry [sets marker way off to the side] I won’t write with this one.” But it wasn’t five minutes later that he’s back to writing with the one I can’t see, and I’m back to keeping my mouth shut and figuring things on context because who wants to be the person who makes a big deal? This is a big part of why even asking for accommodations is so hard for me. When I first started university, I went to the ADA office to ask for accommodations and the requirements to get them were so stiff, that it took me two semesters to even get them and then they were never enforced (and in some classes, my classmates became bullying and openly hostile towards me for the ones I was getting.)
So, pretty much, I dragged myself through ten years of university without accommodations before I finally had to drop out.
Sadly, this doesn’t surprise me at all. It feels like often what should be something that makes life easier just creates a running battle to try to keep it in place, let alone benefit from it. I’ve always been the “dragging myself through” sort too.
Oh, yeah, disclosure discussions with professors. I ended up dropping a class after my disclosure discussion that went like this:
Me (in context of accommodation the ADA office had asked her to give me and she wanted to discuss): “I’m Autistic.”
Her: “no, you’re not.”
Me: “what?????”
Her: “My 15-year-old son is autistic. You aren’t. You have too many interests to be autistic.”
Has she not heard of the word ‘spectrum’?! For crying out loud, you’d think given her situation she’d be more understanding…
Ooh, I just had one of these fun conversations:
Nurse (who I’d literally spent less than 5 minutes with): Any neurological history?
Me: I have an Asperger’s diagnosis.
Nurse: Interesting . . . you don’t have any of the usual Asperger’s traits.
Me: . . . thank you?
Can you imagine if I’d just gone with straight-up autistic? She probably would have undiagnosed me on the spot.
Wow. That’s ridiculously invalidating, but sadly not surprising. It’s so easy for people to forget that autistic adults exist — autistics grow and change, so they no longer closely resemble teens on the spectrum.
This happens to me ALL the time too. Its actually more work to ask for accommodations and nurses are THE WORST. I am trying not to hate nurses….
I have a miserable time with the nurses at my sleep specialist’s office. I have a rare condition (hypernychthemeral syndrome) in which the “time-keeper”) in my brain (a region called the suprachiasmatic nucleus or SCN, for fellow neuro-nerds) is very broken. This causes my brain (and thus my whole body) to function as if I live on a planet where the days are 27 hours long.
Every time I go to see my specialist, the intake nurse wants the usual data (weight, blood pressure, etc.) and also asks what time I go to sleep and wake up. They want a click time. I can’t give them one. The correct answer to “when do you go to sleep” is ” three to four hours later than the day before.” But every time, I have to explain this to them at least five times before they get it.
“Well, just guess.” “Just give me an average time.” “What is it on most days?”
It gets really old, really fast. And these are nurses who work for a sleep doctor!! I actually had to write a pamphlet explaining my disorder because it’s been impossible to communicate with medical professionals otherwise. Something as simple as explaining why I can’t take a pull or injection every day at the same time is a nightmare. And so much energy goes onto that, there’s nothing left over for self-advocacy in any other medical issue. All my energy gets funneled into re-re-re-explaining my sleep stupid.
That’s a powerful consideration to remember – the burning out on one issue resulting in neglect of others.
Wow, you would think that at a sleep clinic, of all places, they would understand the concept of an irregular sleep cycle!
I think they also need something concrete that fits in the little box on their iPad, which drives the “just give me an answer” persistence. Although you did give them a concrete answer, just not the kind they wanted.
The same nurse who said I didn’t have any traits berated me for not being able to put my complaint (language impairment, headaches, personality change) into a “medical term” that she could select from the dropdown list on the computer. Then she took my blood pressure and was shocked when it was 170/108!
Creating a pamphlet is a great idea. Hopefully it not only educates the people you’re dealing with by conveys that you are well versed in your condition.
There’s a double-bind there: if you don’t know enough about your condition, you can’t adequately self-advocate in the doctor’s office. But if you know too much about you condition or use words that are too medical or technical, you can push some sort of insecurity button in your doctor that makes them treat you poorly and/or call you a hypochondriac.
I haven’t experienced that directly but I can definitely see it happening.
Definitely had that one. Doctors *hate* it when you know more about your condition than they do. I would have thought that learning as much as you can about your condition – from a wide array of resources – would illustrate that you take the condition, and getting better/stable, seriously… so why do they instead think it means we’re a hypochondriac?
They just prefer us to know less so they can fob us off.
Wow! There’s a name for it? Hypernychthemeral syndrome. For years I’ve known I don’t work on a 24 hour cycle. On the few times when I’ve been able to go to sleep and wake up as I wanted to, for periods of more than a week, I would settle into a cycle of somewhere around 28 – 29 hours. It would take around four or five days for the pattern to stabilise, but from then on it was steady, and I really felt great until I had to return to a 24 hour cycle. I’ve mentioned this to doctors on several occasions, but their reaction has been to dismiss it as nonsense.
Yes, Barry! There’s a name for it, it’s a real thing! I, too, got dismissed by medical professionals for years. I only began to get treatment after I learned the name. It is a rare condition among the sighted (an estimated 50% of totally blind people have a secondary form of it! because their optic nerves cannot see the sun to send the right signals to the SCN, but those of us with vision who have it tend to have much worse cases and harder to treat.) Autistic people have three times as many cases as the general population. It is considered an “orphaned condition” and my boyfriend (who also has it) wrote the official NORD (National Organization of Rare Diseases) article about it.
My boyfriend as been written up in medical journals and was extensively studied at NIH (where he made significant contributions to the treatment protocol.) I’m currently writing a book about living with it. I’m happy to answer any questions you might have. Feel free to contact me any time. I have an “open door policy” when it comes to helping people with hypernychthemeral syndrome (or N24, as it’s often called for short.)
Here’s the Wikipedia article about it — largely written and maintained by a friend of mine. There’s a lot of good info there.
http://en.m.wikipedia.org/wiki/Hypernychthemeral_syndrome
Thank you very much for the link. It looks like its time to put my research hat on for a while ☺
I know the feeling. After I had been independently identified as being on the spectrum by two health professionals, a third told me I couldn’t be, because I didn’t have a collection. He seemed to be of the opinion that it was necessary to have a collection of objects to qualify as being autistic. Collections of facts or information didn’t seem to qualify as far as he was concerned. He obviously didn’t appreciate the significance of “spectrum” in “autism spectrum”.
Argh. I know I said this on the other post, but I pretty much stopped collecting stuff when I was a teenager. The majority of my “collections” as an adult have been collections of knowledge and facts. I’m curious how many other adults this is true of. I’d never thought about it in explicit terms before.
As a child I obsessively collected many strange things including (my own) chewed gum. I am glad that I moved on to collecting knowledge and facts. 🙂
It appears as if I don’t have a collection, either. In fact, I have a steady stream of stuff leaving my house, car, and woke desk. I spend quite a bit of my relaxation time emptying surfaces of all but three things. I purge closets and dressers continuously. When I see my empty-ish spaces I immediately and effortlessly relax – I can feel my blood pressure drop and my muscles loosen. Sometimes I walk through my house and touch the clean surfaces, or move hangers around in closets only half full. I have a lot of facts and knowledge, but they don’t relax me. It recently occurred to me that I collect empty spaces.
That strikes me as profound, Sg. Do you know the famous poem by Mark Strand? “In a field, I am the absence of field”? Maybe not the same thing, but the idea of collecting empty spaces has that kind of resonance for me.
I can imagine collecting spaces would be very relaxing 😊
Oh I’m so with that. I love going through all my cupboards and purging them. There’s nothing nicer to look at (except possibly one of my furry creatures sleeping) than a nice tidy, spaced out, perfectly aligned cupboard. And an empty drawer, devoid of content – bliss! I spent all of yesterday cleaning my house – not just cleaning (and I clean properly) but taking everything (all the books!) off the shelves and dusting the whole shelf and the books. And the cupboards too (except the kitchen ones, that’s a whole separate job). I was absolutely knackered by the end (and my back is stiff today) because lifting everything on and off the shelves is time-consuming and tiring. But the feeling of a clean house… I’ll enjoy that today. I can’t concentrate on work if I’m surrounded by even a bit of clutter or if it looks grubby.
When I made a major cross country move a few years ago I tossed, sold and gave away 95% of my (and my husband’s) possessions. It was unbelievably liberating. The amount of stuff we’d accumulated in 20 years was ridiculous.
Definitely true of me. When I was younger, my ‘collection’ was books, I’m fairly certain, which seems ‘normal’ so no one cared (despite the fact I had way more books socked away than I would ever read and a favorite pastime was taking them out and listing them alphabetically…). As an adult, I watch myself so I don’t buy too much of something I’m currently interested in, but everything I own and do is part of a curated mental ‘collection’–feminist objects and concepts, for instance. It’s wearing and isolating, because if other people don’t fit that collection I can’t let them too close to me…and sometimes my rules change, which means people can go from a good fit to a bad fit within a week or two. It drives me up a wall understanding that I work this way but being unable to change it!
I struggle to ask for help (I struggle to ask for anything!) and I’m hoping that getting a professional diagnosis in time (assuming I get one – I’m stressing that when I finally get an appointment through they’ll not pick it up because I’m either passing too well as NT (42 years of practice) or because I go into verbal shutdown and can’t explain myself) will make it easier because then I’ll be able to say ‘I have Asperger’s’ and maybe someone will take me seriously. I don’t feel able to say it to many people at the mo because I need the internal validation that an official diagnosis will give me.
But my point is that I’ve enrolled for a second Master’s degree (Open University) and I’ve disclosed it to them. Not because I need much in the way of adjustment as it’s all distance learning and done electronically, but I detest phone calls so I’ve made it clear that my preference is email contact with my tutor and they’ve acknowledged that. It was just a small thing but I felt chuffed with myself.
I just wish I’d known when I was at school – it could have made a few things easier to cope with…
(Another cracking blog post by the way – very relevant and thought-provoking)
The diagnosis definitely created internal validation for me, but it’s not uncommon for other people to just straight up question a diagnosis, even when it’s all official and in writing. There are so many preconceived notions about autism/asperger’s and everyone thinks they’re an expert based on whatever experience they have with it, regardless of how small or far removed it might be.
Good for you, getting the school to work with you on using email instead of phone communication. Every step counts and things like that seem small but they go a long way toward reducing stress and such.
Cynthia! I’ve said it before, and I’ll say it again, I’m sure – I’m so happy that you and Scientist have each other! It sounds like such an excellent, comradely, supportive partnership. It’s beautiful to read about things like the walk you took. I also agree with you about the power of speaking for yourself – I’m reading a book I love, love, love, which talks about non-defensive communication (TAKING THE WAR OUT OF OUR WORDS by Sharon Strand Ellison) and it’s making me do the ASL sign for “I’m making a connection,” which I learned from my time in a kindergarten classroom. This book has a lot to offer in terms of what a person can do to minimize friction through truly representing oneself. For those who experience communication challenges (myself very much included) it’s a great resource, in my opinion. Intelligently written and highly readable.
I’m lucky to have him, for sure. 🙂
Ahem! And he, you!
I’ve ordered that book. I get in such a tangle with words, I very often don’t represent myself as I want to. I hope I find something useful to my autistic self in it. Thanks for the recommendation.
Good morning, JK – I hope the book has something to offer you! I think I find it especially helpful because it’s a guide for communication within a full range of relationships. For my clinical social work program, I have to read (many excellent) books on improving the therapeutic relationship, but the therapeutic relationship is one in which I’m to set myself aside, in a manner of speaking. I was wanting some help in improving communication within relationships that should appropriately offer me *reciprocity,* so that I don’t end up (inappropriately for all concerned) in therapeutic mode, all the time, for everyone I know. That’s why I think this book is so great – I find it well-written and as purposeful as a textbook, but applicable to dealing with family, friends, colleagues, strangers, and others. I feel it’s been helping me already, since I began reading it, to approach relating in a more positive way *without* setting my reactions, feelings, and wishes aside, as I would for a client. Unfortunately, I have my university’s copy and haven’t been able to fill it with underlining and notations – I need to order my own copy for that. If you’re so inclined, I’d be glad to hear whether any of it speaks to you (or not). Did you see the other post with my email?
I’ve looked all through but can’t find one with your email, sorry.
Regarding the book, do you mind if I ask whether your autistic? That doesn’t necessarily matter for wether it’s useful to someone who is. I’m just curious and often think about different approaches to the same thing that work for different people. I often have conversations where a person recommends i try something to improve communication and I feel “if I could do that we wouldn’t have this problem” because it’s often an executive function problem. That’s a bit of a tangent and may not be relevant. I haven’t got very far from reading about the subject yet for the above reason, but on a whim decided to try again after your recommendation. Maybe I can learn some new ideas and at least understand interactions better even if it takes a long time to change anything. The book is coming from America so will be a while before I’ll start reading it but am happy to share what I think of it.
Good morning (day, to you), JK. Your question is entirely reasonable and yet not so straightforward to answer, despite the fact that I’ve thought about it a lot in the last year or so, especially of late. The more time I’ve spent reading comments and posts, the less obvious the matter becomes. The black and white version is that I think it highly unlikely that I would be diagnosed ASD by a professional, and I have not diagnosed myself as such, either. Unlike most everyone else here, with the exception of some who come to the site as parents of ASD kids, it doesn’t feel like an elusive missing piece that explains things for me. At the same time, if I were to make an exhaustive list of my lifelong “quirks,” preferences, and needs, I believe it would look quite autistic – I suppose that part has been a bit of a surprise, although maybe it explains my affinity for the ASD kids I’ve met on the job. I could say “Me, too!” to many things people write here. So what’s the difference? I don’t know that I can put it into words – it’s a consideration that feels almost metaphysical to me. Perhaps this is a piece of it: I have a more “traditional” view of the body, such that seemingly disparate systems are intimately related. The concept isn’t fanciful on my part, but based on the results of personal experimentation. Example: when I started focusing, from a food-as-medicine perspective, on cleansing and fortifying my liver, like magic, my eyes, my balance, and my moods all improved, and I stopped waking like clockwork at 2AM. Another example: many older people I know (I’m not in that bracket) who have knee problems, also have kidney and ear problems, plus thinning hair. So, it’s possible that my body works in ways that have more in common with an autistic system than the average “NT” body would, and in ways that are too subtle for the Western medical research model approach. Would similarities or differences between us be reflected in comparative MRIs? I’m not sure. In any case, when I sought and found this site for personal reasons, self-discovery as in “Aha!” was not the result, but the issues discussed are not unfamiliar to me. I’d say I know them pretty well, better than might be expected – both through personal experience and close relation to others. That email address is presentmomentlearning@gmail.com, if you’d like to share your meditation experiences for my project, or if you have other questions, comments, or reactions to the book and don’t care to post them here.
Thanks for your full answer, I appreciate that. I like your openness to different ways of being and willingness to learn from everyone.
I don’t think the world is divided into just autistic and nt. There’s a lot of neurodivergance even if autism were totally excluded from the picture. There’s a vast array of specific learning differences. There’s personality, learned behaviour, attachments and relationships, health – physical and mental, culture, and plain old individual strengths and weaknesses.
Personally, I wasn’t looking for an autism diagnosis but was tryIng to understand why I couldn’t seem to manage like everyone else does. When the doctors recognised me as having Aspergers it was a shock followed by massive relief.
“In this situation, asking the other person to stop talking may be perceived as rude or offensive. Phrasing your statement as being entirely about you and what kind of self-care you’re going to engage in reduces the chances of a misunderstanding.”
This is such a great point. I’ve really never considered it in this light. The idea that asking someone for something could be perceived as more disrespectful/rude/abrasive than telling them what you need and are going to do about it.
In my mind, and my upbringing, asking is always, always the polite option. In most instances, it is the only option. But reading this is making me think about how it would feel (to most people – just speculating) to hear “Could you please stop talking now?” vs. “I need to sit quietly without talking for a little while.” Even if they are followed up with the same explanation (“I’m feeling overwhelmed and it’s nothing personal” etc.) the question – I think – sound much less polite and more likely to bother or offend.
This is kind of a revelation for me. This whole post is very useful to me and well written, but wow, that one thought is really calling out to me as a big deal!
I think the asking vs. telling might also touch on the issue of good boundaries. Sometimes people seem more respectful of those who set firm boundaries than of people who seem to be asking for “special treatment” (putting that in quotes because it’s not really the phrase I want, but as close as I can get on the fly). I’ve been finding that stating things in terms of my actions and my motivations often gets a better response than asking someone else to do something. Even if that something is as seemingly simple as being quiet for a few minutes. 🙂
I’ve never really asked for adjustments at work in this context. However bad experiences of asking for concessions for other reasons eg. when I was the mother of a very young breastfeeding baby, would put me off doing this.
I have made my feelings about unproductive, hour-long conference phone calls with dozens of participants very clear, as I find them impossible to follow, but this made no difference – they seem to be an inevitable feature of the current IT culture.
The best example of an organisation handling this sort of issue was when I was at art college as a mature student. Because the art college had such a high incidence of students with dyslexia and other specific learning difficulties, they automatically screened all students on entry. This resulted in a couple of my middle aged class-mates learning that they had dyslexia when they had never realised. The college then put appropriate adjustments/assistance in place (computers for note taking etc). For me this was a wonderful, proactive example of how it could work. Many people both autistic and NT could benefit from some sort of adjustment to perform their best in their working environment – if only organisations could see is as a worthwhile way to get the best out of their people.
So true, that last statement.
The art college screening is a brilliant idea. When I went back to school as a mature student, I had to take some academic placement tests, but nothing that would have headed off issues related to learning disabilities. In light of how much more we know about learning and developmental disabilities now compared to when us middle aged folks were kids, it seems like a great idea to do at least some screening that would identify potential issues in returning students.
This whole subject of disclosure and how and when and to whom and what for has been weighing on my mind a lot recently. I have not had health insurance for most of my 60 plus years, but I have been mostly healthy. I don’t have much experience with doctors. Some, but not much. Now that I am getting on in years I am worried that I will have health problems related to aging, and that I won’t be able to effectively express myself to medical staff about my health issues.
I’m really impressed by the clarity in this particular discussion that you are writing about.
Just wanted to say thanks, and appreciate you everyone.
Oh, I just wanted to ask. After I have disclosed to a nurse or dental hygienist that I am on the spectrum and that I have some sensory sensitivities (or say something along those lines) they almost always change their tones and demeanor, and they speak to me as if I were in Kindergarten. Then I say, ” I’m not a child any more. Autistic children do grow up.” It does not seem to help my case. Does this happen to you?
I’ve had mixed experiences with disclosure to medical professionals. Recently I disclosed to a new gynecologist, a new GP, a medical student at the GP’s office and a nurse at the GP’s office. The gynecologist didn’t even blink and didn’t treat me differently at all, even when I told her I was putting off a mammogram until 50. She asked me a few questions and said she wouldn’t hassle me because she agreed with my reasoning. That’s in direct contract to the last gynecologist I told, who treated me like I was lying about the research I cited.
The GP’s office was a mixed bag. The nurse is the one I mentioned above–fairly ableist and definitely treated me differently after I disclosed. The doctor and medical student asked me a lot of questions about the context of my diagnosis, which was odd, although I think they were trying to ferret out whether my neuro issues are related to anxiety or depression, which everyone kept pushing hard. So maybe they were fishing for psychiatric history. But overall they treated me like an adult and the disclosure didn’t seem to change things to radically.
Honestly, though, if I wasn’t specifically asking about neurological symptoms, I might not disclose. I didn’t when I went to the ER for my kidney infection last year, because I didn’t want to make getting treatment any more difficult.
I like your comeback. Straight forward and to the point. But I can see why it would be unhelpful. I had a sarcastic comeback for the nurse who said I didn’t have “the typical Asperger’s traits” and she didn’t seem to appreciate it. Like I cared.
I have had some very stressful events in my life over the last few years and those events have forced me to realize that I need to ask for and expect accommodation sometimes, but that need is also what has finally forced me to admit to myself and others that I am disabled. If I can’t live my life to always hide that anymore, then (for me personally) I feel I need a diagnosis to feel confident enough to say, “I have trouble filling in forms/following verbal directions/understanding you in a loud room because I am… “. As my kids are getting older I am being forced out into the world more often. I have always been an openly different, non-conformist sort of person so adding disabled on to that list feels okay to me now but it has been a long process to get here and I don’t think that a childhood filled with inconclusive assessments helped my confidence at all as it sent the message that something was wrong with me but never provided me with any concrete sense of resolution or self understanding. It certainly never provided me with a label that I could use in those times that I needed one and I was terrified of having to fall back on labels like incompetent, or lazy. It’s taken me a long time to accept ‘disabled’
Disabled can be a hard label to accept. It took me quit a while to understand it in a context that fits me. I’ve started saying out loud to people who are not me recently and it’s been an interesting process.
Having a formal diagnosis does make it a little easier to disclose and to ask for accommodations. I think if I didn’t have the diagnosis, I’d probably try to find another way to word requests for accommodations, but it does feel like it would be harder.
Yet another excellant post! Nailed it as usual. One day I’ll figure what I need… And then maybe I’ll be able to ask for help 😉
Figuring out what you need is definitely a prerequisite. 🙂
Reblogged this on Merely Quirky and commented:
My friends and my mother have been very accommodating on these issues.Actually, when I’m feeling overwhelmed my friends can actually remind me what works for me in that situation, since by that point I’m not really capable of remembering useful tactics.
But at workorextended family situations, I haven’t raised the Aspergersflag
it out.
Having a support system like the one you describe is so helpful. Both my daughter and my husband can spot when I need them to step in and help out. In fact, I’m working on a post about this very thing . . .
As I don’t have an official diagnosis I can’t ask for arrangements in university; and so far I’ve managed to get through without, though I’m known for being a “complicated” student, according to one of my profs. I’ve started to ask for simple things in my private life – e.g. recently in church the pastor went around with a microphone to give people the chance to say something; and he didn’t want to let go of the microphone but stood close in front of me, holding it into my face – I hate it when people stand in front of me inside my private space, it makes me uneasy and I can’t focus (I wanted to say something, after all, but it took me quite a while to get it out in this situation). After the service I asked him to respect that next time and just stand beside people, not directly in front of them, when holding a microphone for them. He seemed to understand. My husband is still learning when to identify statements like “go away. get out of here. NOW.” as serious requests aka distress signals and then act on them, but at least he’s trying (I hope?).
Some of the women in our church’s choir love to wear lots of perfume, which drives another woman and me crazy as it causes us to get nausea and headaches. So after a rather fruitless discussion with our leader and after her open e-mail to the choir didn’t have any effect I just took matters into my own hands and stood up to tell these people of thrice my age to stop using this shit. Perfume contains toxins and if people two meters away feel effects of these it’s time to change something, and I gave them the choice – either me or their perfume. Seems to have worked.
And I’m trying to learn how to communicate that I can’t listen or talk for a moment (happens sometimes when there is so much information coming in I can’t process if before I’ve written it down to clear my head) … but how on earth am I supposed to tell a professor to stop talking for a moment and give me time to write before answering their question when a) I can’t produce the correct sentence at that time and b) saying something would cause me to lose the thought I was just trying to put into a sentence and write it down? Happens sometimes when I’m in a prof’s office for consultation about a presentation or term paper, and I hate it. So far I’ve made it to doing a “hold it for a second”-gesture with one had and pointing to my paper/writing some unreadable stuff with the other one while mumbling something unintelligible about having to write. I think the only prof who might be guessing what’s up with me is the one I’m working for, as she is able to recognize some autistic traits in her son (and says she even sees some of them in herself). Maybe some day we’ll be able to have an open conversation. I could use some guidance these days.
Fortunately, it seems like people are becoming more aware in general that some people need accommodations, even if they don’t know what accommodations are. For example, the no perfume rule is one that I see in a lot of contexts. When I lived in New Mexico, there was even a “fragrance free” sushi restaurant. It was also a big no-no at a yoga class I attended. So things like that seem to be more readily accepted.
I’ve started telling people that if something is important I’ll need to write it down and to please be patient with me while I make notes. Doing that at the start of an important meeting might prevent you from having to stop the person mid-sentence. Or at least make your reminder gesture more likely to be heeded.
A great post for everyone, NT and ASD.
My job’s winding down, I can feel it, and the stress is enormous–going into work each day knowing it’s going to be piecework for me until the axe falls! I’m at a point of transition in my life, and I think I may have to get a diagnosis to survive the transition. At this point, I know if I ‘just’ pick myself up and take another standard office job, I will eventually die. I know most people out there would think that’s an exaggeration (and until recently I would have thought so, too), but I think it’s literal truth. I’m desperate now to find space to find work that won’t eat away whole sections of my mind each day, and to find the time to learn skills I believe I will need in the future (like setting better boundaries and possibly learning sign language–I’ve wanted to be a translator or interpreter in the past, anyway, so maybe I could fulfill that desire by learning ASL). So I have a serious self-advocacy struggle with the world (and myself, as I find it hard to believe myself and hard to accept that I am impaired!) coming up.
That sounds like a lot to contend with, but that a lot of awareness is involved: awareness of stress, awareness of needs, awareness of motivations and interests, and awareness of self-doubt and “deservedness” issues.
I’m aware of a lot more than I was a few months ago, for which I am grateful. This blog has been a great help, among other resources 🙂 I do worry often that I’m being too ‘black and white’ and that there’s some medium point I’m not seeing (or that I have a hard time accepting or adjusting to) that would work better. It’s frustrating to think that I have a mental/biological condition that makes making ‘wise’ decisions, when it comes to work and the long term, particularly difficult.
“Wise” decisions being ones that serve your interests?
Hm, ones that serve my long-term interests, yes. I’m sure I’m not the only one who has a hard time deciding if they have the capability to make conventional ‘wise’ decisions (the biggest wise-decision challenge that comes to mind for me is knowing that I should, by conventional wisdom, ‘have a job before leaving a job,’ but I think I lack the capacity to job hunt while in a job. Conventional wisdom says I should be using my off time to find a job; instead I use it to recharge, and feel like if I don’t do this, I will collapse. This leaves me feeling trapped–‘encased’ in a job until outside forces remove me from it, because the job itself prevents me from gathering the resources to change my situation).
I’m rather off-topic for the blog. I tend to talk about my own pain in comments! I apologize for that.
I assume you’re apologizing to others, Otterknot, since clearly I never mind interacting with you about anything! And I can’t imagine anyone else minds, either. This blog is full of tangents! I’ve known the feeling of almost helplessly requiring a recharge. I have felt it much, much less since making changes to my diet and supplements and starting homeopathy. It used to be that I’d lie down and dissolve into this sense of stillness so profound, that if one part of my body were touching another – hand on my belly, legs crossed, etc. – I couldn’t distinguish with my senses between parts, for really long stretches of time. And I found it profoundly relaxing, on the one hand, but also shameful and limiting, on the other, since it would be so unbelievably hard to start moving again. Now I find I can lie down, rest or read for a while, and then get up, energetically, as soon as I decide to. For me, it’s quite a change, and a welcome one. Needless to say, I’m much more productive now, relative to me.
I’m a pathological apologizer, when I talk about myself 😉
I’m working on making some health changes in my life (meditation, regular exercise, eating better and avoiding possible allergens) and when I can manage them, they do make all the difference in the world. Repeating them often enough to make them part of my routine and keeping morale up while I make the changes are my main challenges right now.
It sounds like you’re doing good things for yourself. Know that you have a champion/booster here on the rocky Northeast coast of the US. I’ve finally, finally started my “mindfulness in education” blog – like, literally, two days ago – so if you’d like to connect about contributing at some point when you have time, we can make that happen. Various people have said they would be willing to share either mindfulness experiences they had as kids, or mindfulness experiences they *wish* they’d had as kids, and having such perspectives is an important part of the project.
Thank you 🙂 I’ll add something to my blog that lets people get in touch with me.
I think it’s good that so many people mention their own thoughts and issues – it makes you (by which I mean me) feel part of something rather than on the outside looking in. I can think ‘yeah, I do that’ or ‘yup, same here’ which is nice. And sometimes I think ‘nope, not here’ but I’m interested anyway because it’s a different outlook on life.
Besides, there’s a lot to be said for putting down your thoughts in writing – it can get some of the crap out of your brain instead of letting it float around. Least it does for me!
You’re right, both about the comfort of seeing others mention things I do and think, and the cathartic effect of writing down one’s own thoughts and feelings. I wish writing things down led to instant solutions, though, sometimes. Or instant acceptance. I think many of us have had a lifetime of being treated as ‘gifted’ and having people, including parents and partners, overlook the pain creating ‘gifted’ products and living a ‘gifted’ life causes us. To acknowledge that, while I am, on the surface, ‘good’ at certain things but that those things can drag the lifeblood out of me is hard. It feels like lying down in the middle of a race. Even if completing the race would leave me horribly wounded, and even though I’m not sure what the alternative to racing might be.
I don’t think that you are being too black and white. I think that so often we, in our North American society, are pushed to be moderate and to find that middle ground, to compromise, (despite all the nonsense about following our dreams), and while moderation is good, there comes a point where we have to listen to our black and white instinct too. That’s true for me anyway.
Oh wow, there’s something I’ve just written and I so wish I could share it with you because it talks a lot about the things you’re wrestling with. Acceptance is a long hard nonlinear process and it can be a really hard fought battle. So be too hard on yourself if you’re struggling with it or feeling like it’s not going to happen any time soon. One of the things I’ve realized recently is that for many years I judged my value based on what I could do and I’ve finally recently started to value myself based on who I am. Growing up with the gifted label becomes very much about identity = work product and there’s always the opportunity to be better, more, faster, smarter, stronger. That’s a hard habit to break. It does feel like quitting or defeat at first. But it’s really not. It’s more . . . choosing to run a different race, I think.
“One of the things I’ve realized recently is that for many years I judged my value based on what I could do and I’ve finally recently started to value myself based on who I am.”
That’s exactly what I’ve just started doing, I think–working on making that transition. Sometimes I look back at young!me and am heartbroken for her. I can remember being a 15-year-old just out of scoliosis surgery, hurting, no friends, and totally mystified when a therapist asked me what was a ‘good thing about me.’ I could tell her things like I follow rules and do my homework on time and get all A’s, but I couldn’t tell her anything about *me.* (Now that I remember that, I remember I got a kitten shortly afterwards and it made a world of difference. How funny. All three of the pets I’ve been closest to I’ve specifically gotten at the points in my life where my sense of self has been weakest. There’s a blog entry begging to be written.)
We do seem to all get trained as runners when some of us would be better off playing some other sport!
My experience of asking for accommodations has been fairly positive. I work in a fairly specialised technology field where event the NTs are nerds/geeks (those words are compliments in my vocabulary) so that probably helps. It may also be the influence of 2 excellent managers who have created a very positive and supportive culture (also one with high demands and expectations but thats no bad thing). It may help that I am only asking for small things and can do 90% of my job well. I have let 5 colleagues know that I am autistic and that I may need to discuss the context of a meeting or target audience for a document otherwise I can completely miss the point. Asking for an accommodation means I no longer have to do this by stealth. The other thing I sometimes ask for is for a colleague to come to a meeting with me if I am expecting to find it difficult – they can assist at key points which helps avoid things going badly wrong and needing sorting out afterwards. Some colleagues have also coached me in different strategies for handling situations where my default behaviour can come across as unhelpful.
I may simply be very lucky in having some extremely nice colleagues and a job that matches my autism to the extent that it is more of an overspecialisation than a disability.
It sounds like you’ve navigated the accommodations maze really successfully. Being in an industry where people are “like you” probably helps a lot. But it also sounds like you know what you need and are able to ask for it in very specific terms.
I think you are right that asking in specific terms really helps NTs understand. I plan disclosure in detail and try to ensure that I am asking for something definite or explaining something that has happened. Otherwise the conversation merely tells them that I am different which means they will probably treat me as different.
My doctors have been lovely when I have told them but I always say “I am autistic and I find direct communication helps me to understand”. One doctor expressed amazement that I had coped for so many years without diagnosis and we spent a few minutes discussing the ways in which diagnosis has made life easier.
The doctor who diagnosed me had a lot of questions about how I’d managed to get as far as I had, given the deficits he was seeing. It was an enlightening conversation for both of us.
And yes, I think purpose is an essential part of disclosure in a professional setting and in many other settings too. For example, I don’t disclose in medical situations unless being autistic is germane to my immediate health issue. Ear ache? No reason for me to share my neurological status. Cognitive problems? Definitely need to disclose up from and then educate aggressively.
I am undiagnosed. The few people I’ve told about my suspicions about ASD haven’t completely bought it themselves but are supportive because they care about and respect me. I don’t know how much disclosing I’ll be doing. I’ve been able to get accommodations by asking to eat at quieter restaurants or taking breaks, etc. I’ve shared here before about my situation at work, where I am a manager.
Not long ago, an acquaintance of mine through professional circles told me about her challenges in dealing with an employee who has disclosed to her that she is on the autism spectrum. It was a surreal conversation. I found myself reacting to her anecdotes with explanations of where the employee might have been coming from and then my friend not being very sympathetic or empathetic. I don’t know why it didn’t strike as her odd that I know so much about autism. I wasn’t going to out myself unless she asked me, but she didn’t ask. It was an eye opener to observe how things look to a manager who is ignorant about how autism can manifest itself in adult women.
For all I know, her employee is reading this post. Like I said, surreal.
I ended up asking, “well, is she doing a good job?” and the answer was yes, and that she was a hard worker who was dedicated to doing things right. So I was thinking to myself, sheesh, are her differences really that big a deal, and can’t you be a little more tolerant and understanding? I’m hoping that my attitude and what I said to her have sunk in since our conversation.
I got the feeling that if I disclosed to her, she’d say I wasn’t autistic and we’d be off on a tangent that wasn’t helpful. She has a lot to learn. Maybe she’s pursuing that now. Maybe SHE is reading this post. Lol.
What you’ve shared here is one of the reasons that disclosing can be so dicey. Even when people have the disclosure information, they often don’t have the background or “theory of mind” (ha!) to deal with it properly. I hope the manager you tried to educate took at least some of what you said on board and made use of it.
Your second to last paragraph is actually so discouraging to read. I’ve often had this sense that just being good at what you do and being a hard worker can be easily overshadowed by a social skills deficit or a serious of social missteps. As someone who is often socially wrong footed, I think I’d almost rather just live in denial.
My husband calls it my ‘I do it by myself’ attitude. I just have a horror of asking for help with anything. That is, if I even think of it… I thought I was just stubborn. Also: lazy, depressive, weird (with both good and bad connotations), socially inept, emotional, different, spoiled. I like autistic best. Of all the labels I’ve wrapped around myself, it’s the only one where I look in the mirror and, literally, call to myself, ‘It’s me!’ Finally – there I am. Still didn’t stop me from spending half the day as an emotional wreck.
I’m thirty-two, female. Three years ago, I suspected I might have ASD traits, after doing some research prompted by the movie Adam and the titular character’s description of how he experienced the world around him, which felt right to me in a way that nothing had felt so right before. I was going to keep quiet about my suspicions, but that’s impossible for me. A thought, once formed, must be expressed. My mother said I didn’t have Aspergers. No way. That was it. No discussion. She knew an autistic boy. He had a funny voice, significant developmental and learning disabilities, and plenty of tics. Nope, I wasn’t autistic. It might be useful to say at this point that I was diagnosed at a few months old as ‘mentally handicapped’ because I wasn’t meeting my developmental milestones. Mum disagreed with this, said she knew I was just ‘biding my time, taking in the world around me’; after a while, i seemed to prove her right. Immediately after our conversation, I stopped my research. Until last night. When I found your site. And found myself again. Thanks for that by the way. My life makes sense now. I make sense. That’s been thirty-two years in the making.
I’m going to continue my research. I’ve ordered the Complete Guide, and I’ve got a three-page list going of all my traits, with specific examples. I’ve done the Aspie Quiz. I was a bit freaked out by it, by the whole path I was racing towards, so I don’t know if I remember the results right. 83 NT, and 147 ASD I think. I am apparently neurodiverse. I ultimately want to get a professional diagnosis. I have some medical issues, some mental health history, that I want explored in this context. I also know that no one I know is likely to believe me until a doctor says it. My act has been too good. Even I forgot how difficult it was for me as a child. I had to move continents, move away from everything I’ve ever known excepting my husband (my deepest, safest attachment), to see signs of the natural me emerging.
I feel obliged to apologize for how long this post is – my good training in action. I have really appreciated the resources provided on this site, as well as your openness, and eloquence, about your own experiences. I will keep coming back.
Congratulations on finding the right label! I know how good that feels. 🙂
I see a lot of my journey in what you’ve written here and I’m glad you took the time to share where you are and what you’re aiming for. It often helps just to write it out and know what someone is listening. It makes a lot of sense that you want a diagnosis for the validation and also as a basis to better understand the other mental and physical health issues you experience. I hope you’re able to see it through.
But even this beginning is an excellent one. Having the label and the explanation opens up so many possibilities. Enjoy the journey and best of luck with it! I hope you’ll let me know how things go. I always enjoy hearing from someone months after a first post, updating me on their progress.
How about a few hours after their first post? I understand now what you wrote about mourning. When I read that blog post yesterday I was so happy to have this new way of thinking about myself that I couldn’t fathom why I might possibly mourn. Or what I might possibly mourn. Then I had a mini-meltdown with my husband. I’m still recovering.
I look in the mirror and I’m surprised that I still look the same. I never had a strong sense of self. I described myself as chameleon to a therapist – a neuropsychologist – a few years ago, whom I was seeing for depression. I also said that it was a full-time job being me. I’m amazed now that so many signs were missed, by everyone. Hindsight is 20/20 I suppose. Now though, what little sense of self I had is being ripped away from me. A new one is coming in its place, one that finally fits, but I’m still very frightened by it, by this potential interloper.
The thing that I am finding hardest to come to terms with is the idea that these ‘quirks’ are not going to go away. I always held out the hope that one day they just would. I would one day be a ‘grown up’ and the world would make sense to me. Humanity would make sense. I feel my coping mechanisms slipping away from me, because of the knowledge that they are no longer temporary. Some of them were very good. I know too that some of them were less than ideal and it’s going to be a very positive step to replace them, come up with better ones.
It was also to my detriment that I could not read my triggers. I feel as if I’ve spent the past twenty years apologizing just for being me. I wanted to obliterate my childhood, calling myself a ‘demon child’ to whoever would listen, so that they would know that I knew how awful it was for my family to have suffered with my behavior the way they did. So that everyone would know how much shame I felt at not being ‘good’, so that they would see how different I was now, how much better. This is so sad that I struggle to process it. I hate sadness as an emotion. There’s nothing below it. There are no words to make it better. I have absolutely no choice but to feel it. Or avoid it altogether. I often opt for avoidance. Who knows where, and when, the feelings will end if I let them have their room.
I’ve never had a community before. I’ve never felt a part of anything before, beyond my present two-person family. It is a huge, wonderful, deal for me to come here and post for a second time, knowing that it’s okay, that my words are okay, that we both belong here. That, miracle of all miracles, somebody – many somebodies – understands.
I feel quite certain you have the support of everyone here, MrsT.
If it helps any, I ran into literature on ASD back in January, and have been going through feelings very similar to what you’re describing since then. My advice: Keep reliable support people close! You *will* need them. I was overwhelmed emotionally by the sense of mourning a person who will never be (and who I’d always thought I could become) and how drastically my understanding of myself, my childhood, my relationships, and my family shifted. (In fact, I’m still overwhelmed.)
I see so much of myself in what you write here. Those are some really hard feelings to sort out and deal with and it hurts like hell to be blindsided by them. What others have said about having at least one close support person that you can lean on and process with is really essential. It sounds like your husband is there for you, which is great.
I found it helped to separate my adult self from my younger self at times and think about how I would treat my younger self is she were a separate person. I certainly wouldn’t be as hard on her as I was being on myself. Doing that helped me embrace all of the messiness and lost opportunities and work on comforting that younger version of me so I could heal. It was traumatic but also incredibly rewarding.
Sending you lots of good wishes and understanding and support. I’m so glad you found this place and feel comfortable here. There are a great group of people who comment and I’m thankful for every single one of them.
Definitely, I feel as if this ride is both thrilling and a little traumatic. I can hardly even verbalize how much this website and comments section means to me – but, of course, I’m going to try. It’s the relief I get after a severe headache has finally lifted. The absence of judgement is the absence of pain. To be understood, not because every single one of my words or experiences makes sense but because I, as a person, am intrinsically tolerated and accepted… It’s the water in the desert for me. It’s the thrilling part of the ride. I have searched for belonging my entire life. Have had glimpses of it, but they tormented me with their ‘look, don’t touch’ signs. I thought if I moved countries, I could make a life, a community, of my own choosing. A very good friend back in Ireland told me that I will never be able to predict how my new life will take shape. I am not sure if even he could have predicted how right he was!
I felt a need to apologize for long comments too, early on, but was oddly comforted to see that long comments seem to be quite a part of the accepted culture around here 🙂 You echo many of the thoughts and feelings I have had over the last few months as well. It is a profound realization to come to, the good and the bad.
I talk a lot. I talk excessively. But the vast majority of words I say to the vast majority of people do not mean all that much to me, and they certainly do not say much that is meaningful about me. This whole experience of sharing honestly, and people actually responding to what I’m saying, is a revelation. And a beautiful one at that. I am delighted to, finally, be immersed in a culture where all comments are judged on their intrinsic self-worth and not by the length to which they run 🙂
I will definitely be working on trusting the few very good, and very reliable, people I have in my life so that they can help support me, as I hope that I have supported them. It was natural for me to start with my husband, and it might take me some time before I have the courage to talk with a friend. This is hard for me, because it feels like there is now a gulf, caused by this ‘secret’, that wasn’t there before. The fact that I am five thousand miles away from all of my friends is therefore possibly a good thing. It is easier not to disclose anything until I am absolutely ready. I fear the noise of other people’s (often well-intentioned, though sometimes no less misguided) opinions too much to find it easy to reveal myself until I am entirely comfortable with whatever it is that I am revealing.
I find your telling of this process, and your feelings, eloquent.
Thanks EA. Talking was one of the first things I did earlier than all my peers, and then it was reading, then writing composition. Other than that I tend to lag behind. I am considered to have a great vocabulary, and I think this is one of the reasons my mother refused to consider I was ASD. I don’t fit the widely accepted profile, especially not after so many years of solid social training. Also, I did really well in school. I have a terrific memory and I adore information, so the Irish school system was positively made for me. So, I can’t be ASD because apparently no one I know knows anyone with ASD who is considered clever. I will enjoy exploding that very narrow image when the time comes.
Nobody seems to notice – or else they haven’t said – how much I struggle with language. And it’s getting worse with age. I struggle to pronounce words I see written down. I see the word, I have it in my head it should sound a certain way, and am later appalled to discover the syllables are formed very differently. I struggle with inflection, with words with four or more syllables. I often mix up the meanings of words, and I could explode from frustration at the effort of plucking a thought from my head and putting it into words that people seem to understand. Sometimes I do explode. Cue another argument with my husband. I only now see how this relates to ASD.
This is why I love to write. The delete button. The thesaurus. Just seeing words physically represented calms my muddled mind. My husband was very surprised the first time he read a piece of my writing. It was so different to the way I talked, he said. It was quite formal, where as my speech tends to be very ‘stream of consciousness’. Unfortunately, in the last few years, I have almost destroyed my love of writing with the fear that I am not following the rules closely enough. Every time I sit at my computer, the fear of failure takes a seat in my chest before I’ve managed to open a document. I am terrified of revealing myself, of appearing stupid, of words turning from my greatest solace into a stick to beat me with, which has, in fact, already happened. I only keep going because the satisfaction I get, the visceral thrill and simultaneous gut-deep calm, when I make a beautiful sentence, one that says EXACTLY what I wanted it to say, is too compelling to abandon altogether. In words, I exist. Otherwise I might just fade away. I accepted some time ago that I do not write creatively (though I do enjoy being creative with a sentence, a turn of phrase); I write to make sense of the world. Writing is perhaps both a symptom of, and solution to, my ASD.
Long comments are always welcome. Embraced even. 😀
I have got myself into a difficult situation for asking for accommodations because for all my life I was trying so hard to be normal and not stand out as different. This means that people don’t believe I struggle with everyday things and don’t think I really have a problem. I need to work hard at stopping trying to “pass” and be ok with how I am but I hardly know where to start. I think it’s as much part of the process (for me anyway) as identifying needs and asking for them.
I’ve had bad experiences in the past when I told a learning support tutor and a physiotherapist I was being assessed for ADHD and they both rejected that easily. Turns out they were right now I’ve been diagnosed with aspergers instead of ADHD, but I doubt their attitudes would be different. I felt stupid and like maybe I was making it all up for ages. I’m not sure how I’d take someone saying that to me now about autism because this diagnosis is making sense of everything for the first time. I feel quite protective of it and haven’t told anyone outside immediate family yet.
I’ve had very good experiences at university relating to dyslexia/specific learning differences and cfs and needing accommodations for those. I think it depends a lot on the individual, and probably on my own self-confidence too. I asked one lecturer/supervisor if I could structure a presentation so people wouldn’t ask questions during the talk because I would lose my place and he was fine with it. He did say he wouldn’t have guessed I had ADHD, but didn’t actually question it and was willing to make accommodations. Maybe because I was obviously working hard and taking his subject seriously.
I feel like my coping has reduced as I’ve got older so I may have need to tell more people in time. Thank you for this opportunity to think about the related issues and read others ideas and experiences.
I feel like there have been various comments on various posts, to the effect that having a prepared response is helpful. In the spirit of the non-defensive communication book, this sentence just popped into my head, so I’ll share it for what it’s worth, although obviously, if and when you say something to people, you’ll want to say what feels right to you. (And by the way, what you say about the challenge of “how to stop trying to pass” rings eloquently true.) If it were me (and it could be on other fronts, such as my intense chemical sensitivity): “I’m sorry you don’t accept what I’m saying, because it’s always validating to have the affirmation and support of others. Whether you accept it or not, however, it’s true for me. It’s my experience, and I felt it might be helpful for you to know.”
Learning to stop passing reflexively has been a slow process and not without resistance, but I feel like I’m getting there. One thing I found that helped was experimenting in low stakes situations if you can find them. Jury duty was one of those for me. It was a one time thing where I would never see people again and I had nothing to lose. That doesn’t happen a lot, but it was a good chance to just go “this is me” and see what happened. Because no major disaster ensued (though there were some bumps), I felt better about “letting my hair down” in other situations. I still reflexively try to pass in higher stakes situations and maybe that’s necessary to a degree? Or maybe I just don’t have the needed confidence yet.
I definitely feel like aging is forcing me to disclose more too. Passing requires a lot of energy and a degree of mental agility that I might not be entirely up to anymore. I’m glad you’re finding this useful and it’s helping you think things through. This is a really personal subject for all of us and one that we’ll each have to come at in our own way. 🙂
I took great pride in passing. It was like a super power realizing that I could just ‘decide’ to be anyone, or be any way, I wanted. I was seventeen, had just lost my Dad to cancer, and, as a way of coping with this, decided to adopt some of his personality traits. He was also very good at pretending to be something he wasn’t, and I thought his act was genius. Ironically, he strongly hinted that he felt particularly close to me because he could talk openly with me. Perhaps without him I didn’t have the courage to go on being ‘different’. Fast forward fifteen years, and I see the price I paid for my powers. Yet, they got me through an extraordinarily hard time, and one or two more besides. It’s hard to have outright regrets (I’m not sure I have the energy right now), but I have a lot of unpacking to do, and I know I am going to have to be careful not to fall back on old habits, just because in the very short-term they seem so much easier. Sometimes they’re even fun! I’m a notable actress in the play of her own life.
I’m accepting small victories at this moment in time. This evening, my husband suggested that I not walk to the supermarket to get milk for the morning as I’d already complained of being very tired. However, I wanted to go, and I wanted to walk. Normally, I’d just fob him off by saying ‘Oh no, I really should get the milk now’ or even ‘I need the exercise’ (though I exercise a LOT). Instead, tonight, I said ‘Walking comforts me’. To be alone with my thoughts, the repetitive motion of feet on footpath, all the people watching (yet no interacting), cooing at cute dogs – it’s bliss. He was a little surprised by my answer, but gave me a big grin. And off I went.
I like the idea of unpacking. That fits so well with what I’ve spent the last couple of years doing. And it’s much more positive than regretting or fixing or some of the other ways I’ve thought of the mourning process and what followed.
Do you think you dad was on the spectrum? It sounds like he was a role model that you were able to relate to in figuring out how to navigate the world and while that served you well for a time, it stopped working eventually. And I think that’s fine. We all find our own hacks and work arounds for getting on with what is often a very confusing and frustrating life.
It sounds like you’re making huge strides right now and that has to be as exhausting as it is exciting. Your declaration that “walking comforts me” made me smile because I recognize all of those reactions you might have otherwise had and also the underlying sense of needing that time and also feeling a need to make excuses to get it. Hang in there, it’s a bit of a wild ride, but well worth it. 🙂
As soon as I wrote that line about my Dad, which I wasn’t initially intending to, I asked myself ‘Was he?’ I’m asking myself that about a few people now. Nobody saw it in me. I didn’t see it in me. Who else are we missing? I can definitely see traits in people who are probably, overall, NT. Concentrating on the fact that it’s a spectrum keeps me grounded. There is no one way to be NT, just as there is no one way to be ASD. I get a lot of enjoyment from the image of hundreds of electric leads in a pink, wrinkled, womb-like mass (my visualization of the brain) and the many very different ways they curl around one another and spark off, even the different colors of the sparks. I’m thinking about communication in a whole other capacity now, looking for pragmatic solutions, as opposed to feeling as if I have to come around to someone else’s way of thinking, or they to mine.
At the moment, I think it’s likely that my father was a man born in a very conservative society, and brought up with a very strict code of masculinity. All differences were repressed. I can see ASD traits in him, and perhaps it was these that eventually helped him to accept me, more fully than I felt accepted by anyone else, even my mother, who was my greatest attachment, thought not a very stable one. There was some language we used to describe him and his behavior which does fit with language often used towards Aspies, like he was a ‘character’, ’emotionally stunted’, ‘unknowable’. He was also prone to inappropriate behaviors in social settings, which came from his awkwardness in them. He was exceptionally gregarious, but hated socializing. He was really good at fitting in, but preferred to work, and just be with his family. He talked in stories and silly riddles, a cool habit I took up. It’s like a way of communicating without giving too much of yourself away. People love a good story. He abhorred change, though was philosophical about it if it didn’t affect him, but this seemed normal enough for his generation, gender, and nationality.
You possibly have come to the same conclusion as I have by now. My father appears to have exhibited some very clear ASD traits. And it explains so much… Unfortunately, I doubt that I will be able to share this information with any of my family, as they will not like this new potential perspective of him, and will possibly think I am saying it only so I feel less alone. It would explain, however, my incredible attachment to him despite the fact that, up until two years before he died, I was a through-and-through Mummy’s Girl. It was only as that relationship deteriorated that I paid any attention to my father. It might also explain why I was his favourite, which even my Mum could not deny though she told me that he should never have said that to me.
This has got more personal than I am usually comfortable with. I tend to feel uncomfortable for the other person, in case they think I am weird, or they feel burdened by the sheer weight and depth of what I have said. However, I cannot thank you enough – and indeed everyone here – for opening my eyes so wide in just the past 48 hours. I will never be the same again, and I do not want to be.
For my part, I can’t thank you enough for noting that there are many ways to be both autistic and not – and in between. I love the conversations that take place here, but sometimes they feel more binary in that regard (perhaps in part due to quite understandable frustrations), and I’m often stifling (or not, as here) the urge to plead the very case you made. Finding this site might mean something somewhat different to me than to others, but it’s been quite meaningful for me as well, and feels especially good when neurodiversity is as inclusive a term as you’ve made it.
The first thought that came to mind was me sitting in my sociology classes in college, arguing til I was near overload that it was not as simple as class (or race or gender) being the defining division in society, or it wasn’t fair to simply suggest that all men are predators and all women victims. Bar my best friend, whom I met because of our shared attitudes in these discussions, I never could convince anyone of the complexities involved in humanity and their society. Never feeling myself to be particularly human, I tend to refer to the human collective as if it’s somehow apart from me. Maybe because discussions like I had in college just proved how little sense it made to me.
So, I am very pleased EA to learn that my somewhere-in-between attitude to most things resonates with somebody. And I like that here there appears to be room for everybody on the attitude spectrum. Haters excluded, I imagine.
I asked my therapist if he would be willing to type instead of talk sometimes if I get stuck. We haven’t tried it yet, but he is willing to do it. Or he could ask me questions and I could type. At the local TEACCH, they offer the option right away of typing/writing instead of talking.
Asking for accommodations is difficult for me. Even if it is something that is not specific to autism, like just having a difficult day and maybe needing an extra break or an earlier break or (heaven forbid!) me asking to leave work if I cannot function. If I hold stuff in for a long time and stress really piles up, that can be worse. Like last year, I was hospitalized several times and then was fired from my job, even though my work performance was very good.
Thank you for your posts. They are very helpful!
Your therapist sounds like a keeper. 🙂
I’m so sorry to hear that you had so much difficulty with work to the point of being ill. What you describe is a such a classic example of how some small accommodations (flexible schedule) would to a long way toward helping autistic adults hold a job and maintain their health rather than having to choose between the two.
Thanks for writing this – your logical approach helps battle some of the insecurities tangled up with asking for help. Your point that bottling things up and powering through doesn’t actually help anyone really hits home. Sometimes I just sit there and take things, thinking that I’m sparing others having to deal with my feelings, but often times they just end up dealing with them later anyways.
One of the most difficult things I’ve run into while asking for accommodations is (so surprise here) other people’s feelings. For example, if I ask for a personal/social accomodation like “please don’t call me at a certain time of day” or “I need to not visit anyone this weekend”, I can end up in a seemingly endless loop of vague feelings. I won’t be able to tell if the other person is hurt or offended, and they won’t clearly communicate to me if they are or not. Then the entire encounter becomes about their feelings, rather than about asking for accommodations (which usually just results in me being more overloaded). I usually walk away feeling like my accommodation is a burden and will cause (silent) problems in the relationship.
I struggle a lot with how my choices will impact other people’s feelings and I was really stunned to learn that other people seem to welcome rather than resent me expressing preferences. My husband said that he’s always been frustrated by my tendency to put my needs last and not assert what I want. I was shocked to learn how excited he was when one day I just lost it and went off on him about something I needed to do for me that ran counter to what he was wanting to do. It was hard to do because it felt like huge inconvenience to him, but I was really at the end of my rope (and it was during the “what do I want” experiment).
After that, i did a lot of thinking about what I’m entitled to as a person and how that may or may not impact others. It’s a tricky balance and one that I’m far from mastering. I still manage to hurt people’s feelings unintentionally and not realize it all the damn time.
Reblogged this on Melissa Fields, Autist.