Saturday, May 26, 2012
The Hidden Autistics - Asperger's in Adults
It took a few sessions to realize this fine gentleman suffered mightly with the symtoms of Asperger Syndrome, which he kept well managed and thoroughly hidden. Contrary to the stereotyoes of adults on the spectrum, my patient displayed no "meltdown" behavior, was keenly (TOO keenly) aware of people's reactions to him and exhibited no bizarre special interests or encyclopedic knowledge of vaccuum models.
In fact, "Joe", as we'll call him, socialized quite well. He seemed quietly confident and wry, intelligent and perceptive. People responded well to him, really liked him, though probably none of them would describe him as a close friend. No one realized - in fact he often went without realizing - that his baseline anxiety approached panic on a regular basis. As soon as he was out of bed, existential angst was his constant companion. His difficulty managing his thoughts made rudimentary conversations minefields to be navigated. And navigate he did, dodging social errors with the same fright and determination one might actually dodge mines. After even minor social interactions he routinely found himself exhausted, and would retreat to soothing, isolated activity: sculpture, writing, woodworking. Not conversation with his wife.
Diagnosing this man was problematic. He truly did not fit the criteria for Asperger Syndrome. In fact, the only person to suspect he was on the spectrum was his wife, who puzzled endlessly about this curious man. He seems so sensitive and kind, she would say. Yet he ignores my birthday and hangs up before saying goodbye. He's so charming with others, yet so silent at home. He never misses a deadline at work, yet cannot remember to give our dog his heart medication.
Partners of people on the spectrum are drawn to what they can sense is inside their partner. Yet they feel shut out, left pining for connection with this special person who remains unreachable. It can be a confusing relationship, and one that can easily lead to resentment.
So what was the problem I ran into with the collaborating therapist? She found it hilarious - outrageous! - that Joe had been diagnosed with Asperger's. When Joe would make an insightful comment during group session, this group therapist and members would share a hearty laugh, rolling their eyes that this sensitive man had been diagnosed as autistic. When Joe would tear up recounting his wife's rage and disappointment, he'd hear "So Mr. Autistic is shaking because his wife got angry! Ha ha! Shouldn't you be indifferent and focusing on dinosaurs?" (I'm sorry to say this is a direct quote.) The general public, even many clinicians, cannot believe someone like Joe can be autistic. His social deficits are so well hidden that he has convinced the world his autism does not exist. And he has perhaps convinced himself.
One person remains unconvinced. His wife. After a long day of running what he terms his "social program", feigning natural banter and hiding anxiety, he is exhausted. His wife comes home to a man who has retreated to isolation as a desperate attempt to find peace and rest.
I'd like to write more about this "hidden autistic" phenomena. Someone must. Adults on the spectrum are often too good at convincing others they are fine, have no emotions, are robotic. This is never the case, and the illusion can be dangerous to long-term mental health for autistics and their partners alike.
I definitely relate to the "hidden autistic" idea. It's as if I'm very good at subconsciously pretending to be a social person when I'm out in public. However, it's also like running in sprint. I can't do it for extended periods and I can't be expected to do it when I'm at home in my safe place.ReplyDelete
In fact, this is what likely led to the discovery of my place on the spectrum. After moving in together, my partner realized what a different person I was at home compared to when we were out with friends.
I suspect that the reason for this is because of how I learned to be social. Instead of instinctively relating to people emotionally, I had to learn what's expected of me using only logic, trial and error as I compare others' reactions. If I didn't have to rely on complex logic before everything I said in public, it probably wouldn't be so exhausting.
It's as if I'm an actor and I have a whole library of scripts memorized that will have you believing I'm confident, funny and charismatic. All I have to do is evaluate the situation and the audience to determine which one will get the desired reaction. However, once I'm at the end of the script, I'll be the quiet one over in the corner, keeping my eyes open and searching my brain for the next script that'll fit the scene.
That does sound tremendously exhausting. I am not on the spectrum, but have an autistic child who is on the more severe end of the range of autism. I do not know that he will ever be able to relate to others. I know that I have been oblivious of things I have said or done that hurt others. Sentences that could be taken more than one way. Incorrect or questionable interactions and questioning whether I did or said anything wrong usually occur long after the supposed transgression. I project my anxieties and assume it is I who is making the mistakes and that people are reacting to things I have said or done when it is entirely possible it has nothing to do with me at all. And I am considered 'normal'. I have to wonder how far one has to fall 'over the line' in order to qualify with a diagnosis...Delete
That's me as well. I'm a hairdresser,and I'm so very social and funny behind the chair that I'm often told I should do stand up comedy. I'm able to.be social at parties,too.....but it takes a huge toll on me. No one sees it,not even my husband completely. He sees me being exhausted and irritable,but doesn't realize it's from having my "programs" running all day with 500 "windows" open.Delete
"And navigate he did, dodging social errors with the same fright and determination one might actually dodge mines."ReplyDelete
I relate so much to this - I couldn't say it better. It's so tough to balance the need to adapt to the speed of a conversation and the one to think and be careful to avoid saying something socially inappropriate. And to remember to give the word to other people and to ask questions, and, and,... so many things. So exhausting.
That's the story of my life. It's the story of many of us women with undiagnosed Asperger's, as well as many of the 'more capable' men. We were ridden so hard that we had to act 'normally', drilled so hard and so repeatedly, and perfected our masks so well, that by the time we're finally diagnosed, hardly anyone believes it and thus we're denied the support we desperately need. It's a horrible catch-22 that we're caught in: People demand that we behave like 'normal' people, then mock us when we don't behave in our natural way. More and more people are being diagnosed in middle-age, yet there is next to no support for them (I'm very, very fortunate, I live in one of the few cities in Canada that does offer services for late-diagnosed people, and am part of the team developing support services at one of our local autism support centres.) Older adults with Asperger's suffer in silence before and after diagnosis, behind their perfect masks, their faces are rotting and crumbling away.ReplyDelete
What cities in Canada offer services for late diagnosis? It is so frustrating being punishing for dumping so much energy into developing a social model to fit in.Delete
Ditto - Burton on Trent, UKDelete
Yes, normality must be achieved and maintained at all time. To draw attention to yourself and your peculiarities invites more judgement, criticism, mocking and disparagement. I was eventually diagnosed in my 30's. The psychologist said I was the highest functioning unassisted adult she'd ever come across. For me it was finally finding out "why" to almost everything. My mother's reaction was typical: "Oh! You're just attention-seeking!"Delete
I am just like your Joe, except I am female. Even if I did exhibit stereotypical characteristics, in our major metropolitan area (one of the 10 largest in the country) has only 1 therapist trained to give an ADOS to adults...and I'd have to pay the entire $2k out of pocket.ReplyDelete
I backed into self-diagnosis after my son was diagnosed, and I realized there was no way he could be autistic if I and my husband were not. We are extremely social people who most would describe as extroverted - but we both have degrees in theater which I think served us in lieu of appropriate social skills and speech therapy.
We frequently come home from social or school events and collapse in terror. I am often driven to bed for hours and sometimes days at a time after social events. I had many of the symptoms of Bipolar II, most of which went away when I realized my anxiety and the resultant feedback loop of behavior were driven by panic about misunderstanding or being misunderstood - I am constantly terrified that I will say or do something I didn't mean to say or do.
When I mention my suspicions, people roll their eyes at me and say all kinds of dismissive things that are, at best, meant to be helpful and, at worst, imply that I'm overdramatizing for the attention. So, yes, PLEASE explore adults like me further and help us get the help we need.
Can I ask who you saw for the diagnosis?Delete
I'm certain that my daughter is, but she too has flown under the radar. I need a professional who is current and capable with female aspies diagnosing.
I am 56 years old and female. When I learned about Aspergers my whole world suddenly made sense. When I paid an "expert" $500.00 for a diagnosis she told me that since I don't think in numbers like an autistic boy, and even though I don't present a single symptom of either, I must be bi-polar or borderline. I have been accepted and integrated in the online Aspergers Community but since I can't go around buying diagnoses at will I am living in constant fear of being locked up, restrained and overmedicated sometime int he net 20 years when people decide I'm too much trouble to take care of.ReplyDelete
Guess what. Not all autistic boys even like math or engineering and not all women with Aspergers are Temple Grandin.
After a lifetime of not fitting in with the weirdos and mis-diagnosis I finally found out where I belong and they won't let me in.
I did not know anyone else feels this way. My anxiety gets so bad I sometimes cannot talk at all. My wife gets furious with me because sometimes I am the life of the party and sometimes I literally cannot speak. I never really understand why my ability varies so dramatically. I do not know when I will be able to "perform" and when I will not. I wish I could be the same person all the time so I could just know who I am going to be at the next event.ReplyDelete
Thank you for posting, please write a book.
I've often wondered if I might be somewhere on the spectrum, or maybe I just have severe social anxiety. But I always feel like I have trouble connecting to people. I can fake everyday conversation, although I suspect I'm not even as good as Joe, and I believe I'm perceived as generally nice but I never seem to make friends except occasionally online, and feel worn out with the effort of trying. I sometimes feel like I seem insensitive, not through a lack of desire but it's like there's a missing connection between what I want to do and how to do it, and often not doing it feels like a better option than doing it wrong. Like saying hello to somebody I'm not too close with... sometimes I feel like I can't just say it, unless they say hello to me and it completes a connection. And like CH above me, sometimes my capabilities vary dramatically according to a formula I don't even understand. Sometimes I can guess at what may conditions make me more or less likely to be sociable, but it's like I'm observing somebody else from afar and making deductions based on what I've seen so far. I don't have any feeling about how I'll be until I want to try and realize "Nope, can't seem to do more than grunt in response to a greeting today."ReplyDelete
But maybe I just want to belong to something and latching on to this as a possibility is because of that, maybe I'm screwed up in a completely different way.
Please, please, please write more about this. I found this article incredibly helpful as someone who is quite similar to "Joe." Thank you.ReplyDelete
This is my story; I didn't even realize I had my social issues until I let go of my coping skills/vices.ReplyDelete
Please write more! I think I am autistic (I can't afford a diagnosis but I fit so much of the descriptions I read), and if I am I am a hidden autistic like Joe--in fact, everything about him really resonated with me. I'm good with people in very casual conversation, but it's really hard for me to make friends, and I have that constant feeling of existential angst, and the anxiety about interactions, etc. It would really mean a lot to me (and I am sure many others) if you wrote more!ReplyDelete
All of these comments greatly resemble my husband. And, yes, he's quite bright and a mathematician. I've suspected his being autistic for some time now. Our kids come to me first with problems or stories because when they start out by calling "Dad," well, Dad doesn't notice because he's in his own little world. He's great in formal social situations -- better than I am! -- but has difficulty forming deep and lasting relationships (except with me because it was just another thing to accept, like the fact that he was born without a leg and most of his fingers). Coping spouses need help too.ReplyDelete
Your patient struggles socially in an important area, i.e., relationships with his closest person. He is willing to change, and is working in therapy, but it is hard for him. He is able to maintain social relationships, but at the expense of extreme mobilization of his social skills, which drives him to intense anxiety. All of it puts him in the category of Aspergers. Regardless of lacking other diagnostic criteria. His wife's story is convincing enough, and he knows that he is different, although he is able to successfully hide it from the world.ReplyDelete
I think that we, doctors, as well as our patients, fall prey to extremely rigid and sometimes cruel criteria of DSM-IV. Words like "does not seek out friendship" or "shows little empathy" do not apply to my patients. In fact, many of them are warm, hilariously funny and quite social, especially one-on-one. They may lose it in big groups, but function well among people who they know well. I could go on and on and on because DSM IV is simply misleading for many of my patients.
Sorry for my dry post, I shall make another one, more personal, but later. Today I am frustrated by the lack of knowledge about Asperger's in our medical community. Our books are so obsolete.
Women with Asperger's seem to fly under the radar more often, and I think the book "Asperger's syndrome in girls" explains the reasons for it pretty well.
I very much relate to this, and like the subject of the article, folks have been very unwilling to think I have AS. I especially relate because of the enormous effort in getting through conversations - the effort being both mentally and physically exhausting - and thus the comment about dodging of mines is truly appropriate here.ReplyDelete
Great post and I sure would like to hear more about others in this situation and what it is like for them.
I did not know what Asperger's Syndrome was until I watched an episode of the Doctors. They were talking about autism Spectrum disorders. When they got to Aspergers it was like they were describing me. I was diagnosed in 1975 with ADHD so when they said a lot of people in the 70's-80's were misdiagnosed with ADHD when they really had Aspergers, it all clicked for me. I was evaluated for Aspergers and on August 6, 2010 I was officially diagnosed with it. Articles like this are important. There are so many older people in their 30's-50's running around not knowing they are autistic. For the longest time I hated myself for being learning disabled. When I went for the evaluation the psychologist found no signs of learning disabilities!ReplyDelete
I'm a very smart, high functioning Aspie. I do lots of activities where I'm around a lot of people, but I have great trouble making and keeping friends, and especially dating. I do pretty well at work, but I feel like everyone only likes me as a coworker. Social life seems more important to me than occupational, but I have little hope for it. I feel like I'm going through the motions wondering what the point is. It's a very lonely and often sad existenceReplyDelete
My thoughts entirely,leading to despair and no it's like the neurotransmitters never connected , escitalapram will helpDelete
I wish I could figure out how to respond to each comment. If you are a very smart and high functioning Aspie (last comment) but have a hard time relating, you are in such fine company. There are solutions!ReplyDelete
Of course there are no answers that come in the form of a checklist. Part of the fear associated with connecting with people is come by honestly: most of my clients have been hurt deeply and often. Being so bright and so perceptive, tiny social errors feel potent. Larger social errors are often never forgotten. Imagine the pain of a man in his 50s recalling a bullying episode from fourth grade: trembling, teary, speechless. This is a great example of the profound hurt involved in socializing for people on the spectrum. That this gentleman could (after much effort) recall the power of these emotions all these years later is an example of great intelligence and great sensitivity causing great vulnerability. No wonder socializing brings with it so much threat, real or imagined.
I read this article out of mild interest when I was researching my cousin's autism, but having read through the comments I realize I share a lot of these experiences. My first reaction was "People cannot actually instinctively know how to interact with other people. Doesn't everyone have to analyze their interactions?" I've never instinctively known how to relate to other people my entire life.ReplyDelete
I constantly analyze my social interactions to the point of obsession, thinking I must have done something wrong, worrying that people will misunderstand me or that I've misunderstood them. Sometimes I can't sleep at night because I spend hours going over conversations that happened weeks ago, thinking, "Was that appropriate? Should I have done something differently?"
I really thought this was only me being weird or silly or stupid, I had no idea other people felt this way. Reading this was like a punch to the gut, and now I'm terrified. I don't want any of this.
Please write your book.
NQ1E de KB2IFDReplyDelete
Hi - to the last commenter - I don't know if you'll see this. I truly think there's got to be some comfort in knowing you're not alone with this. I'll bet you're not very mean to people, right? Don't insult them? My clients take communication very seriously, too seriously to not think carefully about what they say. It's not a bad quality, it's a wonderful quality! Just a rare one.ReplyDelete
I am 53 and was diagnosed last year after my psychitrist noted my severe anxiety, especially in social situations and my distress at not relating well to people. She also noted my tendency to move my hands and one leg in unusual ways especially when i was anxious. When I was diagnosed I was told my mother and grandmother could also have been on the spectrum. My mother was a really odd person. Now it makes sense. Initially I was really upset now I feel much better able to cope, as I use strategies to help me socialise, and forgive myself for any "errors"ReplyDelete
Kaysha, that is so wonderful. Congratulations on the diagnosis. It can make so many things fall into place! I'm glad you're being easy on yourself. Thanks for your comment.ReplyDelete
Like so many above, i am in the same situation. I can't afford a formal diagnosis (in NZ, around NZ$400), but after much research, i am convinced i am Aspie. I spent decades suffering from very high stress and anxiety, over-analysing all social interactions, only very slowly learning the 'non-verbal' stuff (and still not being that hot at it, in my 50s) - and yet i can 'pass' well enough now, in most superficial/fleeting social interactions, that few would guess, unless they got to know me well. Even my family pooh-poohed the idea, at first. (They've come round now.) If only people would understand that, no matter how well we SEEM to present on the surface, there is an extremely high cost involved - for me, it meant developing Chronic Fatigue Syndrome in my late 20s, simply thru the stress of trying to be 'normal'. And for all my efforts over the years, it never gained me any friends, or a lasting, healthy relationship, or even a decent job. I'm now in the position of undoing many of the 'coping' things i did to disguise or suppress my autism, and learning how to be my true self again.ReplyDelete
I am in NZ too, and was referred by my psychiatrist at no cost to me, just last year and saw a psychologist who assessed me and spoke to my sisters, one of whom is an occupational therapist who specialises in working with children on the autistic spectrum. The symtoms of severe anxiety and failures in forming relationships along with the knowledge I was failing, and being very depressed, even suicidal about my failures were the reasons I was referred. My sister (not the occupational therapist)has been told by three different doctors informally that she displays many features of ASD. She has not had a formal diagnosis because she copes well, and it is usually people who are stressed out that get referred. Don't know if this extra info helps you, Kiwipen.Delete
Kiwipen that's amazing. You know I often tell adults who call me to skip the big expensive diagnostic process at the local U. They use the diagnostic criteria as they should, but patients leave, having spent all that money, without true answers.ReplyDelete
It's exciting to imagine you might not have to pretend the rest of your life. I sure wish you luck. Sounds like you've definitely paid your dues.
I am a "hidden autistic". I don't show my Asperger's right away. People are always surprised to hear it and they say "You don't seem like it." or "You hide it quite well." Only when people are around me long enough, they see my social skills lack and my true autism starts to come out. The people who don't get that I have it think that I'm just being insensitive and not caring. And quite frankly EVERYONE sees me that way. I only have one person who I think TRULY understands me and accepts me for who I am. But what can I say? I can show it with customers once in awhile, but it's more my co-workers that it comes out.ReplyDelete
Being the "hidden autistic" is a good and bad thing. I mean, for me it's bad because people don't think I have it, but at the same time, it's good because I seem "normal." But it's REALLY bad because I can't qualify for SSDI or SSI.
My mental health has suffered so much because of my autism. I was undiagnosed for 25 years and I ended up having to be diagnosed with MULTIPLE WRONG diagnoses before Asperger's was the correct one. It was long, tedious and hard, but I'm just glad to have the right one. But I do suffer from severe depression and anxiety along with a touch of OCD. But I have also been labeled Borderline, and I believe I have it. I also believe I have RAD (Reactive Attachment Disorder). So you can see, I'm really screwed up!
I think more awareness needs to be brought up about autism and how we can hide it so well. I mean, if people would get a better understanding of us, then they would at least not think we're being inconsiderate or rude! I want to smack people outside their heads for their stupidity and ignorance.
I'm another who tends to fly below the radar. I have quite an outgoing personality, and I quite like people, so for me, learning to fit in with others was a necessity. However, there have been some costs. In my case, there's the usual anxiety, but I also have executive functioning issues, which seem to be significantly worse than for most people on the spectrum of my overall functioning level. The net result is I am able to make and keep friends. Relationships have tended to come relatively easily, though it's easier with someone on the spectrum! With my first (NT) partner, we did have the issue of he wants to talk, I've got nothing to say at that time.ReplyDelete
Where I'm most affected is employment - the job application process is impenetrable, and education can be affected, depends on how assessments are conducted. I don't handle homework or other out of hours assessments well, again because of the need to unwind after the day, with the additional issue of being in a different context, mentally speaking.
Hi Tony. I think you're really insightful - I hope it helps your partner to know that it's not about him. you know that 90% of my clients have ADD? They're smart enough to get by anyway, so most have never been diagnosed. Those who address is pharmaceutically or otherwise seem to improve.ReplyDelete
Man, i understand work issues! My last job I was picked on all the time by several people, and handed in my notice when I was finally accused of stealing. To keep it in perspective, I have noticed that when someone picks on me, they also target anyone else that they think they can, it's hard to remember this sometimes and realise it's their problem, not mine, however it is an opportunity for me to look at how i deal with this type of behaviour, and that if I didn't have some chinks in my armour, they wouldn't be able to affect me.ReplyDelete
I would have to say, it isn't just memories of bullying that makes socialising hard. I don't think it's about regaining trust in people. I think it's about being unable to filter out the emotional pressure caused by interacting with other people. Just as some of us can't stand levels of light and noise that non-AS people can easily tolerate, some of us find the impact of everyday chit-chat a series of hammer-blows - utterly intolerable and very intrusive. I think the answer is for us to be able to say, "I'm not feeling sociable today, could I speak to you some other time?" Though this is usually misinterpreted as rudeness. And then I feel like I have to apologise... It's a minefield all right. No wonder we become hermits.ReplyDelete
I am a 50 year old woman, diagnosed Aspie. I do also have to say, I believe the best people to write about AS are Aspies - in the same way that the best people to write about gay life are gay people. I don't think anyone else can understand well enough how it feels from right inside.
THANK YOU for this post. I have had so many awful experiences of making people angry by saying the wrong thing. I do feel like I am shell shocked and not able to let go in conversation for fear I will say something wrong. Saying something wrong that makes the other person uncomfortable is unbearable for me. So I spend all my time concentrating to prevent it. After talking I am so tired. And so to read this is a comfort because I know I am not the only one. Thank you very much. Maybe you will consider writing a book. HGReplyDelete
This is a good article. I understand this idea very well because it describes me, though no one in my field would ever guess because I work as a psychiatrist. I actually just suspected until I read this, though I feel uncomfortable going for an evaluation. Thank you for this thoughtful post. I hope you keep up the good work - you obviously have a unique eye.ReplyDelete
Thanks - good post.ReplyDelete
I'm 51, and consider myself a "recovering autistic". My difficulties were much more apparent up until my 30s, but weren't recognized because the spectrum wasn't really that understood at the time, and now I'm "hidden" so people don't see it, though sometimes I do slip and have to explain what's wrong with me. The advent of social media was a big help, giving me a lot more opportunities to interact with people and eventually be more socially comfortable in person.ReplyDelete
Thanks for the article.
What is the best way of managing oneself when in a similar position to the one described?
I have worked hard at maintaining a professional career over the last 20 years, but have had to keep moving around due to issues that arise around fitting in - never technical skill. Sometimes people have to go to enormous lengths to find something to complain about, but they inevitably do, because inevitably they feel uncomfortable with me. It seems to be more pronounced due to being female in a traditionally male line of work.
I think I am in a state of depression after years of the same deal. I am out of work at the moment, and I feel traumatised at the idea of trying to return to that kind of environment. If you can refer me to an article, book, blog entry...or person? I am in Australia.
Hidden autistic disorders are indeed far more prevalent than many health professionals would acknowledge. I went along for many years hiding my "oddities" and for the most part didn't even realise I was doing it. I then had a very stressful period in my life which caused me to have a meltdown. I was then diagnosed as having quite severe depression and some attendant problems. A couple of years later I discovered that about 70% of my extended family have diagnosed autistic disorders, including my nephew who my sister describes as being like I was as a child. I now have the unenviable task of persuading my GP to try to see if I have a disorder, which is hard. Personally I think I have some problem in this area since so many in my family seem to have. I was 35 before any major problems arose so it really is a hidden issue.ReplyDelete
Thank you all for sharing. I am lucky to be a functional aspie but like others social situation are a sometimes impossible for me. I see everthing as a engineering problem but If I can't find a 'solution' I go into lockup.ReplyDelete
Meetings are intolerable, phone calls are a terror. People who know me well say I have a hearing 'delay loop'. In spite being a very successful engineer I've had social types tell me I appeared' stupid'. If I hadn't been a successful engineer don't know how I would have coped and I could easily see myself on the street or worse..
You know, this sounds like me. I've never been diagnosed with anything and don't intend to be - I really don't see how a diagnosis will help anything. But I find myself very much like your "Joe", except I am female. I was socially odd as a kid and teenager; now I don't think I come across as all that weird - maybe mildly "off". I've got no bizarre special interests, no meltdowns, and function perfectly normally in society - I run my own business, I have a good social life, people like me.ReplyDelete
But every time I have extended interactions with people, it exhausts me. I enjoy it, but I can't sustain that energy for very long, and it takes a lot of energy for me to socialize. If the interaction is very intense, I have to get more sleep and take it easy the following day. I've been known to actually spend half a day in bed following an intense social event.
It's not even so much about anxiety for me; I am not anxious (anymore) when interacting with people. It just takes a lot of energy. I've explained it to my parents as equivalent to playing a good game of basketball. It's fun, and I enjoy it, but it's also really exhausting.
One of the reasons I live alone, and will always continue to do so, is that I need a quiet place to retreat to. Poor "Joe" doesn't have that option.
This is my husband of nearly 10 years. Since the birth of our daughter, SHE has become his special interest, as well as the computer...and so I feel more left out than ever. Will he ever "share" with me? Will he ever reach out for my hand in public or ask me how my day was without me asking him to? Do I need to let go of these expectations? I want to stay in this marriage but since he doesn't want a diagnosis, I am at the end of my rope. I love your blog, so relieved to have found it, please write more on this. You are a god send.ReplyDelete
Wow, I can't tell you how much I relate to this article.ReplyDelete
I'm 49-M (turning 50 in a couple weeks)
Just last night, my wife and I were talking and I was trying to explain why, after a long day of dealing with the public, I just kind of shut down after I get home. I will often just escape into a game or a book or a movie. She does all the talking. As strange as that sounds, it's bliss.
I think I like the term "hidden autistic." That's exactly how I feel. In fact, I'm a master of fitting in. I am chameleon-like in my ability to interact with just about anyone. Therefore, everyone assumes I am a real "people person." I'm usually the center of attention or "the life of the party." The truth is, any time I'm dealing with anyone except my wife, kids or closest friends, it is a constant, mind-numbing, exhausting performance, a battle to read faces, body language, and conversations, and then to respond in an appropriate manner. Quite often, I just turn on autopilot and I don’t even realize (until collapsing at home) that I am “fitting in.” I've been doing it for so long that I don't always realize I'm doing it. Then, later, when I'm alone or with my wife, I am exhausted, and no longer have it in me to pretend.
To make matters even more interesting, I am a professional stage actor. I honestly think that part of the reason I'm a successful actor is because I have spent my entire life pretending to have the same emotional responses n.t. people have. I guess that’s not a good way to say that. I do have those emotions, just to different degrees and brought about by different stimuli I suppose. Responding to other people's strong emotions is usually the most difficult thing in the world. Not because I don't empathize but because, perhaps, I empathize too much and don't know how to respond... but that's a different topic.
When people find out I'm on the spectrum, (I don't let many people know) they are shocked.
Our teenage son is also an aspie, which brings its own challenges. My poor, long-suffering N.T. wife is an angel. I don't know what I'd do without her. She "gets me" like nobody else in the world could. On a daily basis, she juggles the strange world of, not just one, but two aspies in her life and home. She's remarkable.
But, it's also so cool to have discovered a group of people who have the same issues I have, and to find out I'm not the only one who successfully lives as an aspie in hiding.
After doing my research, scoring well into Asperger territory on the online screening tests I found, it wasn't hard to self diagnose as a mildly affected, high functioning Aspie. Like most women, you wouldn't know it on meeting me, though you'd likely find something a little off. Upon telling an old friend I hadn't seen in years, her response was "that would explain a lot".ReplyDelete
I know I don't read social cues well and don't respond correctly. My last boss, when I complained about not being told things, said that she stopped telling me stuff as I didn't react properly when she spoke to me. Apparently, simply not reacting became a problem. But it's tough when you have to even consciously gauge how long to look someone in the eye when you talk to them as it doesn't come naturally.
Carlowe, I know it's tough working with people who expect you to act a certain way. In my case I don't really know what I'm doing wrong all the time. I came across this book which is on my reading list, soon, which might be of some help. http://www.socialthinking.com.au/books-and-products/product-category/social-thinking-at-work
Would a formal diagnosis help, if I even fit the criteria on the formal list, probably not. What would help would be learning to better cope with expected social responses when it's not normal for you. Next is trying to learn meditation to deal with my response to stress which has gotten worse as I've gotten older.
A lot of "Joe's" traits could so easily be said of me. For many years now I've been wondering if I'm Aspie. After reading this it looks possible.ReplyDelete
Thank you for this post.
This is my life ��
I am the wife ....
It is soooooo hard to be at the receiving end of an empty relationship
I managed to hide in plain sight for most of my life. It was brutal!!! Identified/diagnosed Asperger's at 65.ReplyDelete
As a 58 year old male i am so plesed to have found this topic here.So many of the responses can relate too.ReplyDelete
I remember finding a book on body language in the mid 70s and it blew me away .... i had no idea that all this stuff was going on.
I could write heaps here but am a tad overwhelmed.
initial diagnosis at 50 proper diagnosis at 53.. acceptance at 55
I am in the process of getting a diagnosis for my 5 year old, and possibly my 8 year old (who is probably more Aspie than his younger brother!). My concern now after reading all this, is am I doing the wrong thing trying to teach my boys how to be "normal"? One therapy goal will be social skills training, and now I'm wondering if forcing them to learn skills that don't come naturally will only add to the anxiety they already experience living in this confusing world? Or is it good to teach social skills because they are necessary in some situtations, but make sure that I give them plenty of downtime especially at home ie. make home their safe place when they can relax and be themselves? I would be very interested to hear the opinions of people who have been there and done all that themselves.ReplyDelete
Just wanted to respond to you about the kids. We are all Aspie for generations here. It's important to love your kids as they are unconditionally, and even seek out friendships with other kids like themselves, but still teach the "rules" of the game they will need to play when they go out into the world. Home does need to be a safe place, so let them be who they are there, but still have boundaries and repeat for others that must happen when any group of people live together. Keeping the home a peaceful, restful haven is important. Loudness can happen, but outside or with agreement of others for a time period. I home school one and let the other still go to public, as that best fits both their needs.Delete
Excellent excellent question. Remember that this blog focuses on the needs of adult on the spectrum. I wonder if there might be a way for you to talk with your children about both ways of communicating, one being more natural and one being more typical. Social skills are great - just not in lieu of self understanding.ReplyDelete
Thanks for your reply. Most of what I have heard/read so far has come from people who work with kids on the spectrum, not people who are on the spectrum themselves. It's so helpful to have insight from people who know what it's like to actually experience life like this. It's also really helpful to read this and understand why it has taken so long for a psychologist to piece all my kids symptoms together - because they are "atypical" like the man in the article. I don't want my kids to end up stressed out in 40 years time too. This blog has also really helped me understand my husband (and maybe myself!) a little better, thanks:)ReplyDelete
My thinking is that if there's an autistic spectrum then there must be a non-autistic spectrum too -- with a lot of us who could be classified one way or the other. I've spent a lot of time thinking about how to apply this notion -- to communicate and develop strategies about these needs more openly (e.g. I'm another one who has managed to be fun-to-be-around for several years of my life, except nobody saw the work involved to prepare, analyze, and recover) without making it sound like we're making excuses or diminishing the challenges faced by people on the lower functioning end of the spectrum.ReplyDelete
Finding your blog this morning has made my day. I'm a 71 year old male, self diagnosed with Asperger's. I first learned of the syndrome about ten years ago and something about the description 'clicked' with me and so I continued to learn more about it over the years. At my age I don't intend to get a professional diagnosis. I am who I am and I'm much more comfortable with that now that I know why. My wife of 49 years is very accepting of the diagnosis. But, my children...as my eldest daughter said, "Dad, you're not autistic, you're just eccentric." I do wish I could somehow convince them that my eccentricities are not of my choosing.ReplyDelete
Thanks for publishing your blog. I will be reading every new posting.
This is a lot like my story: "How can you have Aspergers?" I can be social when needed, I even work in sales (it links to a special interest), but when I come home at night, I'm exhausted from playing NT all day long. Yeah, I can mimic and fake it with the best of them, but it comes at a high price…ReplyDelete
This is me. Just diagnosed. Struggling.ReplyDelete
It is actually quite refreshing to know that there are so many people who can relate to this. I am a 25 year old female, and I think that females with Asperger's can have an especially frustrating life experience because of the way we are socialized. When I was a young child, I was completely absorbed with dinosaurs (I actually chuckled when I read the quote in the original article), and I had such an extreme focus on detail that I could (and still can) replicate almost anything I see in exact detail by drawing. I was introverted, but well liked and definitely what you would call a "nerd". When I hit my teenage years, I became fairly attractive and started receiving male attention. This is when I became most aware that I was "different". As a girl, you are socialized from a young age to be caring, emotional, feminine, and an emphasis is placed on cultivating personal relationships. I am more logical and rational than emotional, but do feel. I do enjoy the company of people, but only a few, since I can rarely connect on a genuine level with the majority of people I meet. Small talk is an exhausting process, one I wish I could avoid altogether. When I meet someone who has the intellectual capacity to talk about something meaningul, however, conversation is not a burden. However, I tried desperately to be a normal teenage girl, so much that I tried out for the cheerleading squad to be "popular and social", and felt like an alien the entire time I was on the squad. I did not care about most things teenage girls cared about, and ended up being very depressed and anxious. Some of my teachers described me as "gifted", and were very puzzled when my grades took a downturn, since I did not lack the intellectual capacity for academic success. I felt very alone and confused. Knowing about Aspergers has been a huge relief for me personally. People who are close to me (especially my mother) can clearly see my Aspergian characteristics, however, most people I meet would probably be incredibly shocked to know I have it just based on my physical appearance and ability to mimic social grace. I almost wonder if it is better to just let the Aspergers loose full-force, rather than expending the energy to be something you are not. I personally see a lot of falsity in social interaction and the world in general, and I think we should be proud to be who we are, and not feel compelled to conform as much in social situations. Some of the greatest minds are said to have belonged to people on the spectrum, including those of Einstein and Mozart. If they tried to be "normal" and did not honor who they were, we may have never even known they existed.ReplyDelete
Please write more. My very good friend is 'Joe', and I would love for him to be happy with himself.ReplyDelete
I agree - please write more. My husband is a "Joe," and I love him tho connecting with him after him being "out in the world" all day is hard.ReplyDelete
Thank you! Though not as socially slick as Joe, I 'pass' pretty damn well. I recently came across information on female characteristics of Aspergers and it was like a million lightbulbs turning on. This is me.ReplyDelete
Righ now I feel very ambivalent about seeking diagnosis. I feel it would help to legitimize my 'claim' - I can see how daft self-diagnosing oneself as autistic may seem to someone that doesn't understand. Yet, despite being convinced now that I am an Aspie (my husband read the same info and agreed immediately), I am terrified of seeking diagnosis and being disbelieved/misunderstood. At the moment, I'm not sure I'm ready to take the risk.
I have recently come across Aspergers after constant worry about my son who doesn't go out or speak to anyone, he is 17. Various thoughtshve gone throu my head for the last 4/5years and after coming across Aspergers on a website I realised not only does my son show classic symptoms but so do I.ReplyDelete
Many questions have been answered for me, especially how I struggle with my husband and soul mate of 20 years-it is a constant battle with myself when he tries to show any affection,I cannot overcome the barrier that's there.not only that my methodical tidying, panicking if my routines are disturbed, anger towards others who make, in my opinion,stupid mistakes.The list goes on and I now realise that's have been like this from a very young age. First real. Emory is from lying in bed perfectly still, straight arms and legs thinking I would be such a better person if i could sleep this way!
I am scared to get diagnosed, at 37 i have managed to hide it away, putting a mask on to the outside world, having lost friends and family over my irrational way of dealing with conflict and closing myself down.
Thanks for the blog and all he comments have helped me realise I am not alone and I need to help my son to live with this and help him to have the best life he can.
My ex husband is a Sociopath. I have Aspergers syndrome. The fact that I have Aspergers is the one & only thing that saved my sanity.I have blunt either/or views about social interactions: hurt me once and I never forget and never forgive.ever. A sociopath (such as my ex husband) requires control over every1 around them. Sociopaths are master social manipulators. but u can't wrong an aspire twice. there are some strong traits in aspires that need celebrating not trying (& failing)2 remove by various expensive therapists. I wouldn't want 2 'fit in' with NT folks (id have 2 lose half my IQ just 2b able 2 want 2 listen 2 NT smalltalk). LOLReplyDelete
I am a 44 artist and have just been diagnosed with Aspergers. They say I hide it well and my level of communication is very high. It took awhile to go for a diagnosis because I thought people on the Autistic spectrum didn't feel emotion- I can feel it very intensely, but don't usually show or express it- except through painting. I can identify with Joe because I can be funny, witty, charming and socially engaging with small groups or one-to-one but I need time alone and struggle socially, I think in complex and unusual ways, I have many of the Aspie characteristics. Thanks to everyone for sharing...ReplyDelete
I too have only just realised I am an Aspie at 45 !!! (I am female)ReplyDelete
I did an online test and scored high, eeeeek!
I am on a waiting list for an official diagnostic test.
I have always felt I am on the outside/a different planet, and totally not sure what to say or how to react- often doing or saying the wrong thing, though thoroughly empathetic and kind to people as it's the right thing to do and I am always very honest and true. I am a complete loner- have no friends, just aquantences...I'd love to have them, but don't know what I do wrong or if I could stand the effort needed.
I don't think anyone would say anything other than "oh she's nice but nuts".
My hubby (only true friend) who I've been with since 17 said on a few occasions I was as Autistic as our AD/HD,ASD daughter(only child)who is now 22....but yet our difficulties are on different levels.
I am hopeless socially so don't go out/ avoid socialising...I go off on a tangent when in conversation about what's in my brain just having to get out, and other people who were speaking and were cut off mid-stream just stare.(Ooops) I am a recluse in my home, suffer depression and anxiety and hate any social thing especially if it's not routine when I wont sleep and frett for hours/days beforehand going over every eventuality.
I spend hours on Artwork and I love Krakatoa(volcano) and animals :) I collect things.
I am very talented and gifted in a lot of things I've been told, and I was clever at school, but totally on the edge though people liked me apparently. I didn't talk until I was 3 and then came out with a whole sentence, but I also would spend visits to relatives behind the sofa hiding and was immensely shy. I would stand on the edge of a group playing wondering how and when I could join them, and I was a silent mouse at school.
During many major surgeries for a rare medical condition, I would be known as the smiler...that was my "face"...I would smile but not verbalise anything....that's even what I do now to get through life- just smile and say nothing as it saves me saying or doing the wrong thing...if I speak it is probably obvious I don't know what to do or say.
I would describe myself now as slightly eccentric, and people often say I am "nuts" but I thought they meant as in "funny" or a good way !!
I would never have thought myself as an Aspie and I don't know if I am horrified at finding out, or relieved as it explains so much...all the things that happened to me and I couldn't verbalise to stop for example. You end up just going with the flow until you can get out of the situation to your safe place...but it's all a "face" and I bet even that looks weird to others.
This thread is good...keep posting everyone as it's good to know it's not just me on another planet:)
I think there are a lot of "Joe's" out there :)
Thanks for the blog post and also for everyone's comments. I finally realised I was an aspie a couple of months ago (I'm 30) but am feeling totally overwhelmed by finding a name for something that explains so many questions, many of which I didn't even understand fully how to ask. I long felt there was something missing inside me - like I felt somehow not quite human. Even possibly a psycopath since I dont seem to be able to connect to people and have to pretend to be normal just to get by. Emotions seemed hard to grasp or understand and I gradually learned to appear as people expected me to be, thinking I would get the hang of things with a bit of practice - I never have.ReplyDelete
One of the most difficult things has been realising that others really don't experience emotions in anywhere the same way I do. It is difficult to describe but it is like I can feel the intensity of the feeling but they all feel identical meaning that I need to intelectually analyse what just happened to make me feel this way and also how my behaviour changes in order to take a guess at naming the feeling fear or disgust or even joy. Yes, there are times when I have real trouble deciding if I feel incredibly sad or incredibly happy - This has been the case a lot when dealing with the Asperger's discovers since it is great to finally have an answer but it reminds me of all my issues many of which I had been only peripherally aware of or played down. It sounds mad but explains a hell of a lot.
I always believed that I was just the terribly shy kid wandering around school at lunchtime with my own thoughts for company. But I took a couple of on-line Asperger's tests and realised that I wasn't just shy.ReplyDelete
I can't tell you how many friends I have lost and how many people who I have failed to make friends due to my 'condition'. Whenever I talk with people, in nearly every case there comes a moment when I FINALLY notice they would rather be having their teeth drilled than be listening to my endless diatribe.
After 18 years of marriage and unfortunately single again, I am finding the dating game a complete mystery. Finding someone else to share my life with will prove a real challenge.
On a positive note, I am so relieved to know that my son does not have Asperger's and in fact, he is the only person on this earth who knows I have it. And I think I like it that way.
People can just keep thinking I am strange :)
Oh thank God. I'm not the only one out there.ReplyDelete
As a child, I was classic aspergers: reading at the age of 4 with an encyclopedic knowledge of space and paleontology (aka dinosaurs), but unable to look anyone in the eye, or interact in a way that teachers or other students could understand. I was horribly bullied at school for both my total social ineptness, as well as the constant references to science and culture I made that other kids would not learn for ten years.
As an adult, I am capable of, and carry out, perfectly normal behaviour. But this is not instinctual - it well practised and learned. At some point, I decided to apply my intellect, such as it is, to the challenge of behaving normally. And I eventually figured it out.
But it is exhausting: the constant self-reminder to look up, look that person in the eye. To remind myself of what tragedies and triumphs this person has had so that I don't misspeak, or forget to congratulate them on something good.. the constant awareness I need to maintain to not be culturally, religiously, or in some other way offensive. For other people this is instinct, for me it is constant perilous navigation.
And other than that I am still perceived as reserved, nobody other than my wife and parents even knows this! Nobody understands that this is my reality under the hood, and that this is why I need to retreat to my guitar in the basement for hours at a time.
This is me. Christmas is finished. I felt like a robot and I now feel completely drained from socialing. I've been in bed all morning avoiding the day but have been reading about asbergers as we have suspected for a while that my 81 year old mother has it but this post about Joe is me!Delete
I was very very quiet at school had a couple of friends who I hid behind. I got through being a young adult by being solitary in the day and using booze as a prop at night to help me socialise. I would avoid long conversations with people as they we exhausting and I always thought they would suss out the real me. I would plan out social situations and conversations in my head and analyse them over and over again once they'd happened. It amazed me when I found out others didn't do this. My boyfriend, now husband laughed when he realised I planned what I would say on the phone. Nothing has really changed. I'm married with lovely kids people say I'm very kind and sensitive but to me everything is a challenge and is exhausting. I roll from one obsession to another, one exhausting social situation to another. Yesterday I told my sister I felt like a robot going through a social situation without emotion just going through the motion. It's crazy reading about Joe and the other posts. I have learnt to hide it well and to scurry back to my safe place. I need to read more. I think I have found my new obsession!
Great posts. I am informally diagnosed and score very highly on the tests.ReplyDelete
My problem is that complex social situations (more than 3 people, in a conversation which is casual, informal, with jokes etc) knock me out, so that afterwards I become uncommunicative and 'cold'. This upsets my wife and others, who say I then 'project a bad atmosphere'. This has just happened again over Christmas.
My current theses on this are
1. my brain has a system crash, as the workload of interpreting etc a complex NT conversation is too much; my social systems just stop working, I become a slab of rock,
2. it is some emotional thing, in which I become resentful (perhaps because I cant keep up with and dominate the conversation).
3. It is some combination of 1 and 2; i.e. a systems problem intertwined with an emotional problem.
Does anyone have any insight on this? I would love any ideas, or even better any approaches people use to overcome this. Thanks
I have similar. I feel after like I'm watching people through a silent movie, through glass; I can't hear them, although I can see them - I can look at them if I have to (e.g. to walk past them in a hallway) but only with unblinking emotionless eyes and expression. Like my capacity for social interaction is totally zero. Like I am a zombie, not really alive at all in a normal human sense.ReplyDelete
HI! I don't usually comment, but did want to leave a note about these last two posts. Most of my clients can talk one on one - but once there are more than two people in the conversation, the rules become too complex to manage. Conversation is actually very complex - managing all of the information analytically requires incredible resources.ReplyDelete
I usually suggest that clients try to relax and participate as a listener primarily. Adopting a relaxed pose and turning to learning as the primary objective helps - the pressure to contribute meaningful and interesting material lessens. It's always ok to be a less talkative participator. The defensive posturing you're talking about comes from (I think) feeling threatened. You can lower the threat yourself by becoming the "interested listener".
Good luck. Great insights you have!
Hi Cary it is very, very kind of you to comment on my post above. Thank you.ReplyDelete
I'm going to try what you say.
It sounds like you don't have any particular experience of my 'system crash' pattern ,when I lock-up socially? Maybe I'm having an Aspie 'tantrum' at those times? If so would you have any advice?
Thank you again
My boyfriend is 49, aerospace e engineer, informally diagnosed with Autism as a child and I am 56 , was a social worker.ReplyDelete
I would have broken up (for the 4th time ) with my boyfriend if not reading this website.Since I love him I am sticking with him with greater understanding and acceptance. After four years together, two years living together, agonized, frustrated, angry and felt rage and sometimes feeling empty and lonely in our relationship I've finally surrendered to stop changing the person he is but to live around his hidden asperger behaviors and try to meet my social needs met outside the relationship. I thought first, it was the cultural difference between us, him a German and me Filipino American raised mostly in the US. I tried to find explanations of our difficulties and his behaviors that would bring me to tears. Maybe it is our communication style, language etc.I must give him credit though for the changes I wanted him to make which was to be gentler and kinder to me as he is with other people. He tried, but forgets easily. It must be exhausting for him as it is for me. I decided that I cannot make our relationship my full time job. IMy focus is now on me to pursue my career in Germany. And not to change the person that he is.
I have finally accepted what I and those close to me have always suspected - I am an Aspie. For all of my 52 I, and they, have struggled with this. It was only recently that I came to realise what a profoundly disabling effect this has had, still has and always will have on my life, especially my relationships. I'e tried so hard over the years and I've failed so often and so spectacularly. It's reached the point where I've grown inordinately tired of trying to hide my Aspergers so I've decide that this new year of 2013 I am going to do my best to allow myself be my Aspie ME. Reading the prceding comments have have helped prompt this decision so many thanks to all of you.ReplyDelete
Any condition gets extra tough if the symptoms don't seem to add up. Even the best online doctor would have trouble just diagnosing the disease - nevermind recommending a treatment.ReplyDelete
I also hate that Catch 22, so much pressure to act 'normally'. You are hounded until you manage to fit in well enough, via self-censoring, trial and error, massive loads of anxiety telling you to avoid things you don't have a shot of passing.ReplyDelete
And then, people assume you are normal, and dismiss any concern as whining or w/e. So you are getting by, but have quadruple stress at the end of the day, and you know it doesn't add up.
America will be so far behind, because our puritanical society is based on desperate attempts to simplify life, especially psychology and sexuality. Their definitions work if they ignore the facts, to the detriment of an apparently acceptable number of people. The same people who could help them understand life, they are causing us to succumb to stress and never get to be half of what we could.
I'm 42 female RN lost every job I have ever had for not being a team player. I have klippel fiel as well was deaf for 3 years as an infant and no one knew. I didn't get any help and was labeled bipolar even though I told the psychiatrist I was depressed because I was not doing well socially. I'm going to Washington hospital to adult autistic clinic to get help. Lost a very good friend who said I was just too intense and needy. I'm so angry with all the treatment I have had no one ever did any testing on me to get a true reason for my social problems even though I articulated it very well. I have major PTSD from social abuse as people get so angry and I have done nothing to warrent it. I'm angry I begged for help to function in social setti gs and no one helped me. I went to an inpatient trauma center for PTSD and was even removed from an inpatient setting because I somehow upset a patient for telling my friend I was upset someone was being mean to me. I was removed from an outpatient clinic as well and was told I was not a good fit for the program all amidst being severely depressed and suicidal but because I was a nurse I was judged on a professional level. I never yelled cursed or raised my voice and was yet not acting appropriate for a hospital trauma unit. I tried psych meds and am very allergic. Can't take pain meds either or I go into shock like a bee stink.. If I touch other people my body hurts all over and I can't touch cellphones or magnets either or I could scream the pain is so bad. I just ask for some skills to function. I know this is biological but I just want to know what I can do to fit in. I'm labeled as aggressive and yet don't do anything aggressive. I feel like if I don't get some hope back n to my life I'll get depressed again. I'm tied of feeling terrified someone will be angry with me because I'm somehow offending them in ways I don't know about. I'm exhausted emotionally physically and mentally trying to figure out how to help myself. I'm so angry as a trained medical professional no one is able to help me. No one In my area treats adult autism. I feel trapped and tortured. I hope to someday stand in congress and tell my story of flagrant medical neglect and torture by the main medical system. Nit failed me and I hate it. I hate being bullied in my places of employment and no one is ever held accountable for lies and purposeful actions to get me fired. If I was blind i would have rights but as a hidden biological disease I'm a victim of cruelty and discrimination on the highest levels. I am a compassionate person with high ethics and demand accountability of others. I'm angry at medical complacentcy and the lack of ethics in modern medicine. I love that I have I Integrity and hate the I don't care attitude of the mass public... I don't understand how people can knowingly disregard the care and lives of others in order of convienence and it's not my problem. I saw so many people die in the hospital because basic needs for following protocal in cleanliness was ignored. I hate being a whistle blower and being bullied because I wanted to do the right thing for my patient. I should have been a health inspector then I'd be hated for following protocol but I would save lives. All I ever asked for 10 years ago was help In social functioning and I have been ignored neglected and abandoned. I hope that this adult clinic will give me answers as I have lost my career income health insurance bankruptcy and friends spouse. May all your journeys be easier as I will do all I can to fight for equality I this very painful medical disabilityReplyDelete
I love hearing I'm not alone and hopefully in the next 20 years this condition will be better understood and we will have rights in employment.ReplyDelete
This is so helpful. About 1 year ago, I met a man (31) who at first just came across as reserved, extremely intelligent, "polished", a bit eccentric, introspective, and...ReplyDelete
In fact, "wired differently", was one of the first words I used to describe him in a seemingly neutral conversation we had. I was driving him home, and all of a sudden he started describing, with specific details, the traffic patterns, why certain drivers stay on a lane, how that related to their "aggressiveness" in driving...etc...he also knew exactly where some of the pot holes were, and just seemed to know that piece of the road like the back of his hand. I thought it was different, but interesting.
On another occasion, I picked him up for dinner and noticed that he was making a type of a "fist", while mildly and repetitively rubbing the inside of his index finger with his thumb. I thought "maybe he is a bit anxious with this date". Being my "chatty" self, I told him I had got an interview for a great position...it took him a few minutes to respond. Unknowingly, I looked at him smiling and said..."humm...please say something"...he did...he said "i'm just thinking here...how did you found this job. Does your current employer know that you're looking? I'm asking because i also want to change my job but don't know how I can do it..."
Most of the time, it was me trying to engage him without overwhelming. I managed to identify a few things that he was interested in and he would talk way more. I loved it when he talked. So intelligent and poised.
There were many other instances that made me think of the "wired differently" description, but never that he was an aspie (I still don't know for sure). He has a very statuesque and somewhat rigid posture. He sometimes stares a lot, but at unexpected things. Very perceptive (almost uncanny).
Nonetheless, I very much like this man. I would like to get closer while still respecting his "world". I too like my alone time, to the point that some of my friends have told me I'm a bit weird. I've managed to get in his world just a bit, that means...he talked...about things that matter to him (or bother him).
(more on next post)
(continued) sorry for the long commentReplyDelete
He's helped me with some PhD application things. I wrote my statements of purpose and he proofread and gave me feedback as well. He is so kind, and sensitive in his own way.
One of the things I appreciate the most, which I think is what "bothers" some people the most is the fact that he is BLUNT. COMPLETELY HONEST. Whether you can hear that and not take it personally is a different matter. I'll take direct honesty any day over "lies". I have my own reasons.
We dated for some time. Then we didn't date (no drama...we just stopped). We kept in touch throughout and he seems to like that I reach out to him.
Then...we went on another date. I know that he feels really comfortable around me, he enjoys the company...he wants to stay around even when I have to leave...BUT...then it's back to "withdrawal". He is so different face to face, than he is on phone/e-mail. He is extremely formal when he writes.
I finally told him...after ONE YEAR that I liked him and gave him a specific list of attributes as to the "why". He is very rational. We still talk...but all he said was "it's ok to be upset. We want different things. etc" And we still talk to this day...and he managed to give me some very meaningful compliments since then. I AM PUZZLED.
My question is...I have never asked him, or introduced the idea of Aspergers to him. Would it be completely out of line, or offensive if I approached it somehow? I'd love to be his friend, at least.
PS: he has been climbing at a rock gym for over 10 years. I have been at the same gym for about 1 year. He told me he doesn't know anyone at the gym. Never talked to anyone there. The other day, one of the people who work at the front desk, described him to me (different story for another day). She was very nice and respectful, but that's when I realized he may actually have Aspergers and it's not only me trying to come up with an excuse.
I apologize for the long entry and appreciate any feedback.
As I read your article I felt as if you were describing me. I have never told ANYONE about my so called label. I am popular, well liked, extremely smart, make constant eye contact and never let anyone know. I have always felt like the one oddball and all of my friends say "oh you just have to know her, she really is cool" I generally do not like people when I first meet them and generally find society as a whole quite disappointing in their small mindedness. I am very outspoken and honest and because I can not seem to lie I have spent my life labeled as a "bitch" I have hundreds of friends or people I know that I consider associates. I only have a few personal really close friends and they laugh and call me a hermit. I just don't understand why people are so mean and hurtful. I recently told someone I thought I knewabout my label because it was the first time I wanted someone to understand the way I think. Funny thing is, he quit talking to me. I try so hard to be normal but it is just not me so I don't know. I guess all I can say is I understand the hidden autism part, because that is exactly what I have done my whole life. Hid it from the world.ReplyDelete
I am exhausted and I know my girlfriend is too. We have just spent yet another weekend arguing. Arguing about what I ask myself. In truth I can answer only that it was about - as it always is, always has been and always will be - 'the way I do things'. I am so tired of 'trying to do things' differently, better, sooner... and of never getting it right. She is fed up of all the same things that my ex-wife (and every woman with whom I've ever had a relationship) grew fed up of and I honestly don't blame her. I am fed up too. However, no matter how hard I try I can't change 'the way I do things'. I really don't want to hurt her or anyone, but it's what I always end up doing. The main problem they all have is that I live my life in a very compartmentalised way and have a time for everything, and I don't do anything spontaneously. I can't deny any of that. I work in a demanding job in which I have to deal with people who have very complex needs. I can do the job, but for me it is like a performance and one that drains me. I find I need a space at the end of the week to find some kind of equilibrium. My girlfriend knows I am on the spectrum, but I think she finds it very hard to cope with me. I don't want to lose her, but I don't know what to do to make things better and easy for her (and me).ReplyDelete
I am 53 and diagnosed with Aspergers last year. I can understand the pain many of you are going through. Thanks for sharing. Since I entered adolescence my life would look like a ship tossed about by a turbulent sea. I am blessed to be married to a wonderful wife, who could have only endured life with me because she IS faithful. We have 6 grand kids. I felt "odd" as a teenager. A counselor asked me later, if a movie camera was on me during the day would I really appear different? He was implying that I would not. Later, I was given antidepressants, they didn't remove the issues I faced. Years later, I was told I am just inside the range of ADHD, this helped me look at myself in a way that explained certain behaviors. But all this did not help me understand why people became "unnerved" about my presence. When I was diagnosed as an Aspie it all made sense. I had an IQ in the 95 th percentile, I was "witty" and intuitive. I wanted to do service work with people. I became a pilot. Now I restore airplanes for a living.ReplyDelete
But, I am worn out from a lifetime of fight or flight responses. My wife says we are too young for you to feel so tired. Tim
So wonderful to read all these insightful posts. It is so exhausting to be in fight or flight so much of the day, for reasons that are difficult to understand. It's interesting to see so many readers here and on other sites share with and offer support to one another. This contradicts observed and researched behavior that indicates people with autism do not bond socially. I hope we can keep these discussions going.ReplyDelete
To those of you who think u may have aspergers go get a neuropsychologist to give y an EEG. The social part of the brain will show difficient blood flow just like a person with a stroke cant talk if the speech center is not "on" so if the social center is not "on" you will be socially blind. Micro brain current is very helpful to wake up the brain just as a person with atrial fibrillation or fluttering heart beat so the brain with gentle current can be reset to function. It's the leading treatment. Use a certified neuro consult as some can do this with out certification as its not regulated yet. Please know they are having great success and in combination with speech therapy occupational and emotional work many people become "repaired" just as a bone is mended scars remain but the bone heals. This is a biological issue and most aspergers have very high beta wave EEG. Patterns this can be lessened and help is available. Hope is here...ReplyDelete
Thanks for the suggest. The other night my mother told my married children about a accident I had in the I third grade. It was 1967 and I was running toward the school wall in a game I tripped, fell, and hit my head on the brick wall. I was admitted for a week with concussion. The EEG tests showed brain wave damage. I had often wondered if the brain waves were different before the fall. I've had several serious head injuries, including auto accident at age 19. I was admitted with concussion.ReplyDelete
Most of my planning in life seems to lack forebrain strength. I operate out of deep determination to "figure" things out. So, new challenges brought a sense of "awakening" to my brain. But, finding a new job every two to three years has worn me out. I have learned metal, wood, and construction trades.. I've driven school bus, city bus, truck, and farm equipment. I went back to community college in my 30's and worked as nurses' aid in a hospital, trying to find a way to go to physician's assistant school.
After four years in the hospital environment, a new supervisor gave me a poor eval stating I was not a "team player", so went back into construction to earn more money for my family. I am a classic underachiever.
This past year the company I worked for became ax cited about my "engineering ability" when the owners son became manager. He wanted to give me opportunity to work as a member of the "team". Prior to this I learned CNC programming and operated our first CNC router. After two years of intensity around the CNC the owner asked me to restore his antique airplanes. I ended up working for 4 years mostly alone in his hangar. Now, I "panicked" about "team player" I spoke openly about my concerns with the son.
In the mean time my wife, a counselor suggested I have aspergers. Tests affirmed strong possibility;-(
By the way, the company hired someone else as engineer and I am still restoring planes with much less compensation in my future.ReplyDelete
My biggest issue is not being able to filter out things that cause sensory overload. Mostly body sounds and movements of people around me.ReplyDelete
I relate to this a great deal. I learned how to socialize at a young age, watching the adult members of my family, who were the majority of my social circle as a child. Despite being very socially adept, I have always viewed it as a skill or coping mechanism. I do it because it is expected both for work and just to function in this culture on a daily basis.ReplyDelete
I was even in the performing arts (acting on stage) for a while in school, it was easy, because I acted all that time. Pretending to be a normal teenage girl prepared me to play all sorts of other fictional beings who I couldn't completely relate to, but i could mimic enough to fool an observer.
Now, that I'm older and am a stay at home mom, I happily limit most of my social interactions. Most of the time, I prefer to communicate with most people via text messages or email, or some other medium that allows me to deal with the interaction at my own pace and to ignore the conversation for days if I want.
I would love more research done into this subject. Especially, since I am the mother of two boys with autism. My mother actually presents a lot of the traditional signs of Asperger Syndrome.
I wonder how many other parents who have children on the spectrum might actually be "hidden autistics."
I have been married for over 44 years and only 3 years ago through much prayer and research did I finally find an answer to my whys. My husband has classic adult Aspergers. It has been a tough lonely road. Would love to have a support group.ReplyDelete
Great article, and interesting case.ReplyDelete
I found the most common and amazing issue about us asperger´s is that unexplainable self-awareness at a very early age. A kind of instictive knowledge that you are different from the rest in a way you just can´t explain, you just know it, till years pass and you learn that your struggle has a name, and usually you feel a kind of relief.
Relief on confirmation?, yes!, perhaps because you stop feeling all alone like a unique alien on earth, suddenly you find out there are more aliens like yuo living disguised here, and that is somehow relieving.
I am an NT female and have many Aspie friends Although I have one Aspie friend that most people would never no was Aspie. I myself noticed before he actually told me only because I have had many friends with AS over the years and even have some autistic cousins. I thought nothing of him not fitting into the typical Aspie box because everyone is different. After meeting his family I have been wondering if he was in trouble with his parents a lot because of many of the stereotypical Aspie things he may have done when he was younger. I do not wish to ask him directly and wondered if there was anything I could do to figure it out on my own. I would also like to know if there is anything I could do if his parents did in fact (for lack of a better word) "train" him.ReplyDelete
Where oh where are the partners?ReplyDelete
I am 74 yo and my
hb is about to turn 79. We have been "married" almost
50 years. Until a year ago I was convinced that our
rocky marriage was due to workaholism on his part
and an abundance of tolerance on my part.
Now I am convinced and he is mostly in agreement, that
ASD has been the problem all along.
I have been in therapy for 2 yrs. and have the classic
Cassandra Phenomenon which seems to be getting
worse now that I realize that the one life I had to live
was with someone who in no way could have been
expected to understand what I was trying to tell him.
Why do so few Aspie partners post here? God help us!
To late for that dream marriage but not too late live. We walk a different road - alone. I found my peace in my Lord Jesus - my only peace. I live a seperate life because my husband works all the time - he doesn't have any idea why I do what I do. I don't waste time anymore - I take one day at a time and thank my Lord for it. God will help - if we allow.Delete
Blessings - Peace & Hope
Thank you for "outsmarting" the "outsmarters".ReplyDelete
I am a twenty-eight old, mysteriously charming, male who is discovering I relate with ASD and all things Aspie. It is terrifying. I have not gone for official diagnosis yet. I needed a few days to freak out. I am currently safe, yet sleeping in my car at campsites to hide the fact that I am essentially homeless.
I can fully relate.
In fact, I recently discovered I was not only crumbling like coffee cake from dodging social mines each school day; I was faking sleep. This allows me a(n almost never completely) quiet place to let my mind go wild. I know most of the neighbors mannerisms and catch phrases and sexual mannerisms without even meeting them because they interrupt me from saving the world (and face) during sleeping hours.
Getting out of bed in the morning is my biggest challenge of the day. I am never rested. My muscles hurt from forcing control over my impulses to dig my hands in fabric textures and twist and turn my body. I am capable of panicking in my "sleep".
I am in chiropractic college because the people are interesting and smart. Those schools provide an unreasonable amount of financial aid so I can hide the fact that I can't hold down a job. I have tricked myself into superiority. So, why take a lousy job when I can distract people by telling them I will be a doctor? That quickly shifts focus away from my sweating body, red cheeks and awkward quirks. I also spend time around people that are addicted to caffeine. They are open-minded, yet often poor observers.
When I started staying with my girlfriend more often, I would feel the need to literally run away and hide somewhere to dream up top-secret plans like a child. I started breaking down when she explained the complexities and compliments of her day as a fifth-grade teacher. I recently started hiding from her in bed and putting the pillow over my ears for a big hearty and hairy "mantrum". The cry sessions are a little embarrassing.ReplyDelete
I became obsessed with death and suicide ideation (not going to hurt myself...) just to dream about being dead and "resting in peace". That is exactly what I want...to R.I.P- but I can get healthy and be afraid of death again like everyone else...
So, she did something positive for me and asked for her keys. All it took was a face-to-face situation with the reality of being alone in this big and scary world. I am quite aware I need assistance at this point. I need to let myself "feel like a freak" in front of strangers for a little while. (What is better than going to McDonald's in a light grey T so people can see my obscene sweating and deter their children away from me while I type this?) I needed to be exposed. I have even tricked every therapist (3) that I have spent time with. I take pride in hiding my ASD.
My writing is poor and tense annoying, but I am doing my best to write about my experiences hiding from a major mental/social deficit and just how much energy it can take to pretend the hero.
I simply could not do it anymore. I just fantasized of being dead so I can rest and escape the pressure from all the people who "demand" such skill.
I get so anxious on the inside that I wear layers of hidden clothing to hide the "dinner plate" sweat stains in my underarms. I am actually afraid of having heart problems at the age of 28 (started as early as 15).
Now, I have taken so many SSRIs and clonazepam and adderall and Vyvanse and mood stabilizers with no help. In fact, I am so sensitive to the medications because I am so used to fighting my appearance to others that I actually spend the whole term of treatment trying to fight the drug response. Stupid (we can all agree on that?).
I am relieved and scared, but at least I am connecting with ASD. It is a pretty damn scary thing, but the people are not so scary to me.
P.S. I would like to hear about those dinosaurs, even though I am often guilty of joking about how they don't exist. I can hide most things with humor. Even joking about my own death. Always hug the funny ones.
I think I will name my book "Homeless Hero".
Write more. You are brilliant.
To help some people identify. Admitting you have ASD at the age of 28 is like outsmarting and "killing off" a 28-year-old and allowing yourself to act like your "13-year-old" emotional self until you learn the difference. It takes a lots of humility and almost a removal of all privileges until you have to rely on your emotional instinct to find a way back to the people you love. They will understand, but good luck explaining it!ReplyDelete
I would actually love to do a documentary on this idea- if anyone is interested please reply to the post with your reactions to the article, and indicate interest at the bottom of the post so I will know. Thank you all for taking off your "masks" and sharing such difficult ideas and emotions with us. It is helpful to someone who almost defended normality to the death.ReplyDelete
Thank you for writing this post (and the blog!). I found it early this morning while trying to think about what to do about my troubled relationship. Both my husband and I suspect I am somewhere on the high functioning end of the spectrum due to my extreme reserve, difficulty reading other people's emotions, and lack of ability to communicate about emotional issues. I come off as relatively normal and can do well in small social groups, but am exhausted when I come home and want nothing more than to go on a long walk in the woods by myself, or sit quietly with the cat, or go to the pottery studio and re-center myself. Instead, I come home to a spouse who wants my attention and needs emotional support, which I am at that point completely unable to provide. I've looked at regular relationship books, but nothing is ringing as true as Aspie-specific resources. You've given me much to think about. Thank you.ReplyDelete
Amazing thread, I have been researching Aspergers, which I guess is now re-labeled ASD, for the last few days. I have a lot of Aspergers traits and I walked on my toes when I was young which is a classic Autism trait but I was born in 1969 when diagnoses were not common, which I guess is fine, as I was forced to be as normal as possible and am considered artistic and eccentric. I have been a caretaker for people with developmental disabilities and have worked with a client with Autism, who was high functioning but disabled (he seemed normal to me lol) and my ex-husband, father of my daughter, has an Autistic brother, with mensa level IQ, and my ex is also very Aspie-like, smart, special interests (many)no filter, etc. Their father is normal but mensa also. My dad was a nuclear engineer, is super quiet and super smart, now he has Parkinson's which I hate, he may be on the spectrum also, but in his time and place he was respected for his brains and his calm. He never had outbursts like my ex and I and my daughter do. I also have a boyfriend who is diagnosed Autistic, with co-morbid mental illnesses, unspecified. I would say he has suffered the most, he was raised in rural TN has been in jail and abused,he is amazing and sings like an angel and has an IQ of 170! and refuses to get on disability and is too scattered and has too much social anxiety to go thru the process. I tried to care for him for a while until he got into liquor (BAD IDEA) and his other mental issues took the forefront and drove us apart, now we just talk on the phone because he had to go to his mothers house. I love people with ASD but I have always been around the kind that are attached and WONT STOP talking! So I only get overwhelmed and then lonely when things don't work out...ReplyDelete
This has to be one of my favorite posts! And on top of thats its also very helpful topic for newbies. Thanks dudeReplyDelete
Im very happy i found this article. I've never read anything I've felt this at home in. People tell me I'm good at social situations, but on the inside im sweating, there's no enjoyment and im nervous. It's all a play, a set of rules I follow which I've picked up trhough my elders.ReplyDelete
I too have this exhaustion at the end of the day, i lock myself in and ignore everyone. Which if goes on for a long while can be quite catastrophic, with hints of depression and avoidance. I'm not diagnosed with aspergers, and I don't even know what to believe myself, but i feel that i fit a lot of the criteria. Except, I cover it up, and live in denial. Im having my first meeting with a psychologist today, I might try to air this topic. Keep your blog going, it's very interesting and helpful for people all over, thank you!
Divorcing a husband that refuses to address his resentful attitude, violent impulsive behavior and depression has been difficult. I assumed that he would be able to understand his behavior and get the help he needed when I took the time to understand, research and show sincere concern. I have done this work but I have a difficult time understanding an older person's rigidity. Psychologists must have answers for some of this. I do hope he is able to care for himself before he ends up in the hands of the law being unable to handle his anger and frustration.ReplyDelete
Thank you so much for this piece! Though I knew my husband for many years before we reconnected and became a couple, he seemed "quirky" (his first present to me was a bar of soap - just regular soap, but something he liked) - and somewhat shy, but I would never have guessed he was on the spectrum. His older brother had more of the clear symptoms, but even he was diagnosed early on with schizophrenia, self-medicated most of his life and recently died of complications due to alcohol and drug abuse.ReplyDelete
My husband goes to therapist for himself, and we are in couples therapy. It has been frustrating for both of us that when we bring up the possibility of asperger's syndrome, they look puzzled and say, why do you think that? He has been diagnosed at different times with ADHD, depression and anxiety disorder. He has been on and off various medications for these things, which has created more of a rollercoaster than any relief. Because he is kind, witty, and generous, people don't "get" the ASD possibility.
Having worked with teenagers with ASD of varying degrees for many years, I started to spot some of the tell tale signs - emotional withdrawal, violent outbursts when he gets frustrated or angry, inability to make and keep appointments despite valiant efforts, difficulty keeping jobs and taking everything personally (for example, when someone answers the phone with what he feels is a surly tone of voice, he's convinced it's directed at him, even if the person did not know who was calling. I love him like I've never loved anyone, he's my partner and my best friend, but it's painful to watch him suffer through weeks on end of depression and anger - sometimes catalyzed by his losing a backpack on the metro, or iTunes "not working as it should". I want very much for him to gets formal assessment, but it's been difficult because his therapist (who has never worked with anyone with asperger's) doesn't see it as likely. Our coules therapist, who I actually like very much, once stated that he didn't feel asperger's was a likely diagnosis, because, "People with asperger's syndrome don't feel shame," and my husband deals with a lot of self-doubt and shame on a daily basis. Does anyone have suggestions as to how we can find a good clinician whom will do an assessment? Without a referral from one of our therapists, we don't know how to get someone who will be paid through insurance. Please advise, if you can. Thanks.
I am so happy to read this. This is the kind of manual that needs to be given and not the random misinformation that's at the other blogs. Thanks for sharingReplyDelete
I've just been reading the new DSM-V manual, and they have added a subtype under autism called social communication disorder. It's not officially "autism", now, but everything you described that this gentleman encountered is so true of the adults I see as well. It's great to come across your blog!ReplyDelete
I am 56 and believe my husband is aspergers ( 52) ; and believe i am half aspergers ; lol ; I say that I am 1/2 as I do have traits and had signs as a child that make me wonder ; was called pensive before I knew what that meant , hair pulling , anorexia . My sons believe they are aspies too ; one more social than the other ; one is very analytical / engineer brain and the other is more social but artistic / guitar , etc.ReplyDelete
I was clearly drawn to my husband as he was Different than most men I had known. I always knew I was a little different too and regular guys / nt guys with big bold personalities etc did not appeal to me. When we are together just the 2 of us my husband can give me his undivided attention / special interest. But when gets busy with work , he can forget I am even out there . So it has been hard ; we fought alot early on due to his selfishness ; imo . So we no longer fight ; I understand him since i have a library of aspergers books now and when I am feeling down I pick up a book and re read or go online to sites like this one for affirmation. I often wonder if aspie men and women are drawn to each other telepathically or in some way from first meeting . There seems to be a connection that doesn't exist with nts/ aspies.
My uncle is 86, and we had to start dealing with him this last year when he had a stroke. He's been living alone for the last 20 years, since his mother and father passed on (practically a recluse). Apparently, his mother (our grandmother) did everything for him -- most of his shopping, laundry, etc. -- and made sure he went places with them regularly. He never married, but he was a draftsman/engineer all his life. He has learned excellent coping skills, and can function in public, but the stroke has definitely caused additional stress.ReplyDelete
Nobody told us anything about his 'eccentricities', and now they're all gone so we have nobody to ask. But it became really apparent that his behaviors weren't just stroke-related. He has all the traits of a high-level functioning Asperger, and now that we think back, this was apparent over his entire lifetime. He was fascinated by trains and liked to collect train memorabilia. He collected music and transferred it all carefully onto mini-discs (along with labels and the whole bit), but never listened to it. He gets confused when there is too much noise, so he never listens to music!
HOWEVER, we can't get him to cooperate with getting a diagnosis. A diagnosis would be very helpful for working with doctors regarding medications and treatments, and it would be helpful when trying to explain to caregivers why he behaves the way he does. He can fixate on minute details for days and weeks, he doesn't handle change well at all, he has real problems socializing in the living center, etc.
It would also be helpful with things like Aid and Attendance funding, tax reporting for his Assisted Living, etc. So an 'official' diagnosis would be really useful.
Problem is, he's been this way all his life, and he was sheltered by his parents. He believes he's normal, and resents any implication that he's got what someone his age might consider a 'mental' problem. So he refuses to cooperate with any therapist or counselor, even for simple things like speech therapy or physical therapy. He gets angry and sulks, and even throws occasional mild tantrums.
What can we do? Not much, apparently. We're trying to make his last years as comfortable as possible, but he sure doesn't make it any easier. Both my sister and I wish that one of the grownups in our lives had given us some kind of warning years ago....but they probably never thought that we'd end up taking care of him!!!
OMG! !! I am just TODAY finding out why my 87 year old father is the way he is...I moved away at 25 and now 56 I have been back for 6 months looking after my father..it's been EXTREMELY frustrating. and difficult for us both. ..thanks for this article and blog...now i need to be the adult and do the right thing for my dad who has suffered in silence for all these years...where to go to get him help should be quite the journey. ...Thank you ...Thank you...THANK YOU...Delete
OMG! ! After 86 years of wondering why my dad was so weird ONLY today I now have the answer with thanks to this article and blog...I moved away 30+ years ago and have been living with him for 6 months to get him over the winter and into an assisted living place...now the journey begins to somehow get him the help he deserves.Plus somehow provide the understanding to him he deserves from his only son.. Thank you...Thank you...THANK YOU....it's going to be a challenging journey he so much deserves someone to lead on his behalf...good luck with your uncle..He could be my dad.Delete
We Aspies who are adept at functioning in neurotypical social interactions get exhausted. We should out ourselves as Aspies and demand acceptance. It's not like we can fake being NTs, and we shouldn't try. We can interact nicely. It's on the NTs to not act as though life is one long clique of exclusionary behavior with eye-rolling when someone who doesn't blend in comes along.ReplyDelete
I can REALLY relate to this! ... I'm maybe not quite as well hidden as this man BUT pretty close ... infact what you're describing is probably pretty COMMON in terms of AS and females ... who are often to 'social' and 'perceptive' etc etc for anyone to thing AS might be the right dx.ReplyDelete
I can't thank you enough for this post! I'm a self-diagnosed autistic. (Recently discovered blogs written by professionally diagnosed autistics that I could very much relate to.) I'm sure I came across as quirky to different friends at various times, but there was so much more than that, and even I knew that at a young age. And that's exactly it: people might have liked me, but they wouldn't have considered me a close friend. Because I really have no idea how to relate to them on a deeper level-I'm working overtime to try to come across (and for myself, failing half of the time) as a neurotypical socially!ReplyDelete
THANK YOU for this article. It is so great. You know what you are talking about. I showed this to my SO and he said it is the first time he has read something that made him feel understood. I was so happy that I could show him that he is not alone. THANK YOU. I hope you will write a book and provide us all with more of your insights. My SO and I are going to make it work but we need guidance from someone who gets it. Thank you for going to the trouble to share all of this insight. -MeganReplyDelete
Aha so I am not the only good actor. I can turn it on for short spurts but must rest afterward. I feel a sense of horror. My girlfriend does not understand why I am upset when it appears everyone is loving my humor and stories but I am dying inside. I thought I was the only one. This is more than social anxiety.ReplyDelete
I relate to Joe's and all of your experiences very much. I am 22. I self diagnosed myself with Aspergers at 16 after reading about it in an article and then doing some research on my own. It took a while to convince my family; they used to poke fun at me. "How's your ass-burgers?", my mother and sisters would say. When I was around 19 I began suffering from grand mal seizures. It took less convincing after that. People think that because I'm polite and cordial most of the time that I'm cotent. But the reality is I'm more like a ticking time bomb. I can carry on boysterous and quriky conversations with other eccentric and creative types with ease, but my emotional state in most social situations usually lays somewhere in between sheer terror and profound vexation. I feel fear because I don't want to make a bad impression and I feel perplexed because society places such rigid, rudimentary, and unnecessary standards on what is deemed normal and abnormal. This is especially true of the black community here in America. That's why I opt to spend most of my time alone. Thanks very much for the article.ReplyDelete
Wow! I'm finally beginning to understand perhaps some of what has made my life a complete contradiction for many years. I am quite successful at work, yet (maybe even not completely consciously to myself) struggle to stay focused, to engage with people, and to not say inappropriate or awkward things. I often find myself completely exhausted when I get home, and am prone to "lose my temper" verbally with my wife and our two children, or to just seek quiet away from them... which has led to frustration, confusion, and fear for my wife, and depression for myself.ReplyDelete
I'm so glad that HER therapist suggested she read "The other half of Asperger Syndrome," by Maxine Aston... A few weeks ago, a day or two after I blew up over some now-forgotten and probably trivial disruption at home, she gathered enough courage to suggest that perhaps after more than twenty years of marriage, we should seek counseling... and she shared this book, in which I recognized myself so many times over. I've since taken many different online evaluations, and have read much on different blogs. We started couples counseling last week, and I will be pursuing individual help with my own recent self-discovery.
In many ways, it is quite a relief to read the comments from others who seem so much like me. Thank you very, very much for posting!
Having your wife of 40 years pass you a book without comment, while researching AS to better understand our 6 year old grandson, and find yourself saying in your head "That's me" is a mixture of surprise and dread. She also said "That's him". I relate to so many of the above comments that to name them would be arduous. What I have found is to know about my AS doesn't change anything but it also changes everything. I am what/who I am so it changes nothing but it gives me the opportunity to repair some of the damage done to my family, especially my children. My inability to relate to my children caused an abuse by neglect, it was as if I chose to snub them. This abuse was unintentional but still real and severe for my eldest daughter. Girls get so much of their self image from their dad's and my daughter grew up thinking I hated her resulting in a massive barrier between us. That is the bit that changes nothing but the bit that changes everything is I now have begun to acquire some ability to repair some of the damage. Knowing I am not able to function as others do means I can choose to function my way without any guilt for not being like everyone else. I am now 63 yrs 9 mths and discovered my identity 18 mths ago so my wife and I have a long way to go. I will state very publicly my wife must be a saint to have survived me so long. I now look forward to making amends for our past as far as possible. Thank you for the opportunity to share in your stories which give hope and direction.ReplyDelete
As someone with Aspergers/Autism I frequently face these sorts of responses - generally people don't want to recommend your case at the DSHS because you seem 'presentable', completely oblivious to the fact that talking to one person on a specific subject is totally different for me than working in a noisy, chaotic environment full of incompatible demands on my attention. I have been essentially unable to work and the mental health and vocational rehabilitation places have no regard for anyone who doesn't appear literally retarded.ReplyDelete
I keep coming back around to the conclusion that my boyfriend has Aspergers to some degree. Sometimes he can be right on socially, but generally, no so much. He can be quite insensitive and uncaring, but always expresses shock when I point out a behavior as such. It's quite clear he doesn't intend to be that way.ReplyDelete
He gets pretty defensive about it, too, and I don't know a good way to say "Honey, have you ever considered you may have Aspbergers?" without doing major damage to my relationship. Any advice?
Over 115 comments and barely a single grammatical error or typo; how pleasing!ReplyDelete
My 41 year old brother has Asperger's (diagnosed by me) and I think this may be the best description I've read to date. I am myself a little (and only a little) away from the median and the key thing here is public awareness. Greater awareness equating to healthier relationships for all: those with Asperger's and those interacting with people with Asperger's on a daily basis. It's a lot easier to forgive social faux pas and misdemeanours when the reason behind it is understood and that it is not a personal attack.
A great post and so many excellent comments. I can certainly identify with much that has been written, coming from a family with three generations of males with Aspergers - with only my son actually having an official diagnosis.ReplyDelete
I too find social interactions can sometimes be exhausting and lead to a lot of self doubt and "over-thinking". It is unfortunate that Aspies are often typified as being "deadpan" emotionally- I see myself as being quite an emotionally sensitive person really. I have found that the issues you mention can be particularly challenging in the world of work, and in my case have contributed to burn-out.
I have Asperger-like traits: communication/social and sensory processing difficulties. My upbringing led to low self-esteem and good manners. Early marriage and 25 years of full-time parenting resulted in delayed development of goods habits for self-care and personal priorities. I was good at playing the part of the good girl, the good wife and mother until about 15 years ago. Then empty nest and menopause led to problematic incompatibilities with my spouse. Unfortunately, as I allow more layers of myself to show, he feels threatened. We both feel stuck in a downward spiral, despite some couples counseling. There is part of me that he can relate to, but I don't have confidence that he can accept parts of me that have been hidden for so long. I am hoping that as I get more comfortable with being atypical, I will be more able to work around my quirks in a positive way. He is highly educated and well-read. Is there a good book out there for partners who just want to go back to how things were 20 years ago?ReplyDelete
I am like that too. I am, however, divorced. I personally think that the psychiatry is at fautlt, and in fact selfish, in regarding aspergers solely as a social default. Adult aspergers can EASILY adapt social codes, learn them and thus hide being autistic.ReplyDelete
What the psychiatry seem to miss, often, is that aspergers is as much an INNER problem, as it is visible social difficulty. In the shape that negative feelings and thoughts are repeated over and over again in i.e. MY brain.
We are sensitive not only to Things like light, snug clothes, sounds, smells and so on. Things repeat in Our brains. So aspergers should, in fact, ONLY experience good Things in life.
It doesnt have to be visible, other than if you are CLOSE to the person With aspergers. AND, I suspect that the same is true, also to People on the Spectrum, that DOESNT have verbal Language.
I am a physical therapist in the US and only after observing our 2 children who are on the spectrum ( one is an aspie in the truest definition and the other is high functioning AS/aspie ) I have learned a lot about myself and it helped answer some questions about myself and my own childhood. I now believe, after self assessment and from my wifes ( who is an OT who specializes in treating children on the spectrum) observations, that I have Aspergers to some degree or another.ReplyDelete
As a child I was the chronic daydreamer in class, losing myself in my drawings requiring redirecting by the teacher. My vocabulary was always very advanced.
I struggled with and cycled through various tics ( and still do to this day)and tried alternative tics that were less noticable to other children, but difficult to abolish the tics as I always felt I needed the brief comfort that a tic provided. It's difficult to explain.. I was fairly sociable but always cherished my quiet, alone time. I enjoyed college much more than high school because it allowed me to be as social or nonsocial as I chose and focus on studies. The library was a safe haven for me. In my last semesters of physical therapy school, my classroom academics were never an issue, but with increased clinical intern work, I realized I had to invent a social version of myself in order to have success and better communication with my instructors and my patients. To this day, when at work I am, to a degree, " on stage" , acting out a role or more expressive character version of myself that is easier for NT's to accept, otherwise I can sometimes come across as aloof and uncaring. It is fatiguing however. Once home, I am very tired and just want to be alone but I realize that is not fair to my wife and children. I have been a physical therapist for 21 years now and consider myself very good at what I do with advanced certifications. I have often read but have never posted on these forums until today and for some reason, wanted to share my story with others. I am now trying to carefully let my aspie version out of the box more often and It has been liberating. With my work I have no choice but to contain my AS features, but I realize that oustide of my work that I need to liberate myself some which has allowed me to rediscover art and am realizing and developing my drawing and painting skills which has been very therapeutic. A very special relationship with my children has developed by the fact that my children and I are able to have these bizarre conversations on a level and direction that only we can share and appreciate and that is a wonderful thing. Despite our struggles with AS, God made us this way for some purpose and I like to think we play a special role in His plan.
So how does an adult like this get help when even mental health care professionals seem to miss the signs if it doesn't fit the one size fits all mold society is used to seeing?ReplyDelete
I'm your stereotypical Asperger. Reading about the 'hidden autistic' makes it seem like it is a more foreign world to me than the NT world. I wouldn't even know how to start hiding my symptoms and controlling my behaviour. Do these people have no other mental illnesses or ADHD? Because I can't see someone with ADHD having much control over what they say to people. We're an impulsive bunch, unless they are inattentive and barely say anything. What is so important about socialising with people more than your family? I'm the opposite; I really can only talk comfortably with people I see on a regular basis. Can people just stop hiding their symptoms? I was on ADHD medication that made me more social then I went off and now I'm less social and I'm not as articulate even if I'm still more social than I was before starting ADHD medication. When I get hyper I'm more social but I don't have any control over my behaviour at all. I'm not even sure if I would hide my autistic behaviour even if I could. I remember I once had more control over stimming but it's great to relieve stress and I used to be under more stress when I didn't stim. Now though my hand just likes to shake in those stressful situations if I want it to or not.ReplyDelete
I'm a female "hidden autistic"-- well, hidden sometimes. It's very true, what I've read above: I work SO hard to act normal, using all the checklists in my head that I've put together through trial and error over the years, and it's EXHAUSTING. And then, when I try to self-advocate for important things, people shrug off my requests because I "seem fine" and "must be really high-functioning". Let me tell you, High-Functioning Autism" is still AUTISM. I still get misfires and crossfires in my inconsistent, overreactive, undependable brain!ReplyDelete
Shadro, I think something like 30% of folks on the Autism Spectrum have a co-morbid diagnosis of ADHD (as do I). I've found that ADHD meds don't make me hyper; actually, they help me calm down just a little. My challenges are still challenges, but I'm more likely to stack my efforts and intentions in the right places. (Fluorescent-light-flicker still messes up my spatial cognition, sock-seams still distract me with a rage of wrong pressure, and my working memory holds a pitiful amount of eye-contact-timing and mouth-movement-measuring before I can't follow complicated sentence structure out loud-- but at least it's easier to know what's going on, and remember the few things that "work" for those situations!)
Yeah, stims help. A LOT. I've just gotten old enough (and spent hours enough) that I consciously choose Sneaky Stims that people don't notice as much: Wiggling toes inside the shoes instead of drumming and twitching fingers; plucking a single hair from my arm instead of grabbing the hair on my head... But even my Old Standby Stims don't erase the drain from "acting normal" all day. By the time I get home, my To-Do list has to be gutted.
The more normal I seem "out in the world", the less cognitive and executive function I have at the end of the day, the longer it takes to get paperwork done or make a doctor appointment. Ironic, huh?
He with Aspergers, was so affectionate and loving. He is very high functioning. Intelligent, witty, socializes really well with his group of friends. He was slightly awkward but I found that adorable. When we first dated, he was so sweet and responsive in person. When we were apart, he seldom shared his life and was distant. In the year that we were together, when we were in each others presence, he was very emotional and empathetic. That would quickly go away when we were not together in person. He went through a period when he did not know what to do with his life, I tried to help but became frustrated with both the lack of direction as well as the lack of communication.ReplyDelete
So our relationship started to become stressful on him. One day he was telling me that I was his "dream girl" that the only thing he is sure of in his life was that he wants a future with me. Literally the next day, he was so cold and told me I am not what he wants. This was after I became upset that he was not responding to my messages for a period of time. I was so confused and distraught. He proceeded to ignore my emails, calls, messages for a month. When he finally spoke with me again, he was not the same person. He is easily agitated, unwilling to communicate and unwilling to compromise. It's like the person that loved me so deeply, so completely, more than anyone he has ever loved, was a totally different person. Now he tells me he doesn't have time to work on a relationship with me or anyone. I am emotional, because I am hurt and he doesn't seem to see why I should be and think I'm putting pressure on him by being emotional. Right now, the emotional side of him that makes someone human is completely gone, and the only side remaining is the logical side. He said he doesn't know any other way to be but logical. He thinks that there is something wrong with me and even called me emotionally unstable/hysterical when I cried. He has trouble communicating so he says it's because I don't listen to him. I cannot for the life of me get him to see anything from my perspective despite however hard I try. His voice is monotone, cold and devoid of any sort of emotions. He is so fed up that he no longer wants any communications with me. The worst part is the fact that he doesn't see how this is attributed to his Aspergers at all. He was diagnosed in the 3rd grade.
This relationship has left me a mess. I am having trouble piece things together and I am having trouble moving on. What happened to the sweet, sensitive, caring, smart, witty guy that I once knew?
This sounds so very familiar. If you ever write a book about this, I'll get it. I've been diagnosed with a social anxiety of some sort, but when I try to explain how I feel in social situations, the therapist goes "But now you are not anxious at all!". Yes, because if I stopped following the situation script in my head, I'd be sitting quietly! After 20 years of following scripts and acting like normal, it's not easy to suddenly stop it.ReplyDelete
This is the story of my life as well. I can relate directly to Joe. I can't sustain the 'normalcy' for extended periods and that level of social engagement is exhausting. Please write more - therapists and some diagnosticians need your insight.ReplyDelete
This "Joe" sounds just like my husband. However, my husband often times has huge melt downs or rages of anger where all he can do is yell to express himself. Once he has finally calmed down and is able to hear me out he is able to process that he was wrong to scream and will often time say sorry. However, he always seems so confused or so matter of fact almost robotic with how he views his actions. He often times thinks that he is being misunderstood or that I don't understand what he is telling me or even more times than not he misinterprets the things that I say to him. He has a very hard time reading social cues or completely ignores his surroundings at times. This can be very annoying and frustrating for me and our family. He gets very sensitive when I mention anything regarding aspergers or that it is a slight possibility. Reading everyones comments has helped me I just need more info I guess and more support on how I can make things easier for both of us.
This "Hidden Aspergerian" hypothesis really reflects me.ReplyDelete
I took a course in high school helping kids with Learning Disabilities (LD's). As expected we learned about LD's. While learning about Aspergers I thought: Wow, this is me.
I have meltdowns and have a great deal of trouble cementing friendships.
I expressed my hypothesis to my teachers who guffawed and said, "Dylan, you're far too social and popular to be considered an Aspie!!"
Despite a desire to be a part of one, I've never had a romantic relationship, or any close friendship.
Sure I don't walk like a robot, don't have a fascination, was never bullied, and had more inflection than the rest of the school combined.
But I've never had a long lasting friendship, and as a kid, change upset me more than soup. (Yes, I'm frequent user of sarcasm and wit.)
Depending on the social atmosphere, I can love socializing. (For example, during high school, I was my Student Council's President.) I also express great amounts of empathy for those who need it, have no trouble reading social cues, love making idol chitchat, and am "incredibly polite."
Years later, after a particularity bad meltdown, I checked myself into a mental health clinic, where a psychologist suggested I might be an Aspie. He referred me to a Aspergers Specialist who insisted I didn't have Aspergers. For I was "too social."
After the program at the clinic, I tried a few Aspergers support groups, but felt shunned, because I wasn't "Aspergers enough."
It's like I'm too odd to be neurotypical, but too normal to have Aspergers.
Thanks for this blog post, Dr. Terra!
I think oftentimes, communication can become a "special interest" for many autistic people, because they realize it's so important. So by the time they're adults, they actually become even more skilled than NTs at reading verbal/facial cues, even if it's more intellectual than intrinsic. It skews adult autism tests horribly, too. "Are you good at interacting with others and reading faces? YES!!"ReplyDelete
The greatest problem with having Aspergers is that you have to hide it in order to get by, otherwise you run the risk of being judged, feared or worse treated like a total idiot. So what's the answer here, hand yourself in or put the disguise mask back on and keep going?ReplyDelete
Can I please take this and publish it in my magazine for others to read. This is amazing. Hello my beautiful amazing awh inspiring fellow aspies. I'm a mimicker so I get on well socially but I relive every social situation in my head so much that there is no need for fiction. My partner is also an Aspie and our two beautiful children too. Life is hard but reading this has helped and reading the comments has made me feel like I belong.ReplyDelete
Thank you so much for this article Cary. I really hope you write a book because this kind of info is not out there. Especially when it comes to couples. It takes alot of work to get through the day and there is nothing left for loved ones. I am so tired all the time and it seems like life is so much work. I wonder if I will ever get the opportunity to be myself because as soon as I relax too much I do something wrong. Noone realizes how exhausting it is. but you do.ReplyDelete
Thank you...when my son was diagnosed as autistic, we knew right away where it came from... Diagnosis or not, many of my family members fall into this group, including myself. Ï cope better than most of them, but it takes SOOO much... One of my partners has pretty obvious ASD (that really should have been diagnosed early) and we are in the process of training him to cope a bit better...ReplyDelete
Thank you so much for this article Dr. Terra.ReplyDelete
i have shared into a german facebook into a group for autistic adults, parents and all kind of teachers, doctors
Hello Cary and all who have responded to this blog post!ReplyDelete
I am a therapist specializing in Asperger Syndrome and in my practice I have found a subcategory of clients who fit some of the criteria for AS but not all. They present more like GIFTED adults. Please read this article and let me know if it may resonate with any of you - especially with you and your client, Cary: http://www.sengifted.org/archives/articles/counseling-gifted-adults-a-case-study?utm_source=April+2014+Conference+Updates&utm_campaign=April+2014+conference+reminder&utm_medium=email
Thank you for posting this article - I can relate to it very much. I used to watch TV shows over and over again to pick out the correct scripts to use in social situations. But my mother who is the only person I have ever been close to, denies that I am autistic, so for a long time I thought I was a psychopath. I like myself now, and don't fear that I am a psychopath. I wish to find a friend, but maybe now I can ease myself into a frienship. It used to be I thought I was manipulating people because I ask questions about life, but now I think it is possible that some people are just drawn to thinkers. I certainly have never made a relationship with somebody with the intent to manipulate them or serve some cruel purpose.ReplyDelete
When I read this it was like someone was describing me. I've been trying to get a diagnosis through the NZ healthcare system. However there is currently no funded way for adults to gain a diagnosis of Asperger's in NZ. I'd have to go private. That would take hours of time with a specialist and the cost is minimum $130 and hour plus GST. Of 15%. So frustrating. I'm glad this person has you and his wife to advocate for him. Thank you for caring.ReplyDelete
Finding this blog is a godsend to me. I began a relationship with a woman about 15 months ago, and very quickly I realized that she had some sort of mental impairment or illness. She was extremely affectionate, yet also had these horrible rages. I initially thought she had BPD. I began to see a psychologist to help me with her. I cannot get her to see the psychologist because she does not trust them. She was involuntarily committed for 3 months once as part of a jail sentence. So I had describe her behavior to the psychologist as i puzzled it out. She had been diagnosed with bipolar disorder and schizophrenia. Very mild schizophrenia she has (she has audio halucinations sometimes, but she know they are halucinations). But my father was bipolar, and bipolar she is not. The BPD like rages moderated over time, and BPD just did not seem to fit very well. One of the symptoms I described was being ignored for an hour or so when I came home from work. That her "ignoring" me for periods of time was a source of conflict between us. That an other things led my therapist, who had an Aspie boyfriend and an Aspie father, to suspect Aspergers. Using that as model of what was going on with her made things between us much better, as it helped me interact with her better. But the classic descriptions of Aspie's on the web just did not fit her, and even though the diagnosis seemed to work so well, how could I reconcile her with these descriptions. She is very beautiful, and can handle short tem or narrow social interactions very well. She is completely unable to do math. She is definitely mentally deficient in some things, yet seems very bright in other ways: brighter than me, and my IQ is 140. She does not seem to have an all consuming interest unless that is mothering her child, or her interest in her appearance, clothes, and fashion. She is sometimes empathetic, and sometimes just can't detect my feelings and the feeling of others at all.ReplyDelete
But reading your descriptions and your view of Aspies in this blog matches her very very well. It has kind of put me at peace, because at least two professional (you and my therapist) are looking at her the same way, even if most therapists would be like those in one of your blog pieces, who are laughing at the idea of a particular patient having Aspergers.
I plan to work my way reading through your blog postings. I am very thirsty for guidance for NT males with Aspie women as relationship partners. You said in one of your posts the reason that NT's engage in relationships with Aspies is that they are drawn to the usually hidden person within. That is so perfectly true for me. I am also drawn to this woman because she is very beautiful, I would be lying to ignore that, but beauty lasts a vanishly short time if your personalities and values do not mesh. And ours do.
So thank you for your writing and research on Aspie couples. And especially your writing about Aspie females, of which there is so little out there. I have seen it written that Aspie females are much less obvious than Aspie males. I don't know why that is true, but I know it is certainly true of my friend. And it is relatively hard to find writing about Aspie females, especially high functioning ones. Please keep the writing up. There are many of us out here who are like thirsty men in the desert for this stuff.
All the best.
I see my self in these description very close.ReplyDelete
It's a shame in my country is just begginig to take a look at aspies.
Adults just have to go through the best we can.
As a fellow Aspie and reading all of this information I think that most if not all people that are "normal" are just stupid at least in my area. I try to be nice but I get crap in exchange and then others don't even want to try to understand me. I am starting to feel resentment for mankind because everybody believes that some magic pill is going to cure autism. People need to pull their heads out of their you know and help those that truly need it like us aspies. It is getting to the point of where I am going crazy and it is especially hard living in the southeast with stubborn hardheaded people who do not want to help even though they say that they do. I am 25 years old and am glad to know that I am not alone on this. We need to stand together.ReplyDelete
I am an older woman in my late 60s and have only just discovered that there are female asperger traits different from men. My son has been diagnosed recently with aspergers and will not accept it because he does not want to acknowledge it. So he won't accept the services offered. He has put on a lot of weight with antisycotic drugs and that is very upsetting. He is 34 and is wasting his life really. I was misdiagnosed as not having it by someone who knew nothing about female aspergers so I have asked to be reassessed. It would help me to have a formal assessment at the end of my life.ReplyDelete
So glad to read all these comments, in addition to the article. I'm 63 years old, female, and have never been "normal." Very high intelligence, chronic underachiever most of my life, and I have PTSD from physical, emotional, and sexual abuse as a kid. I've come to the conclusion only recently that I probably am an Aspie. Nothing in my life has ever answered my questions about myself and my way in the world. I've "passed" as NT but it's been getting harder and harder to do. Now I don't work anymore and it's all coming out. Thank you all for your insights and stories.ReplyDelete
I so hope someone reads this. I am at wits end. My 6year old daughter got a "multiple indicators for Asperger's Disorder", diagnosis from a psychologist. We are military, so that qualified her for ABA therapy. A "tutor" has been coming to our home for 3hrs, for over a year. While she has made great progress. The progress I now see is her hiding her autism. She hides her anxiousness. School is so overwhelming for her. Yet, no one sees it. She goes under the radar, because she has not meltdowns. She holds it together. I'm here wondering how to ask for an evaluation for a little girl that does everything she is told, yet is a wreck inside.ReplyDelete
The post you wrote could have been written about my 6 year old little girl. What I know she needs I cant provide. She needs a world that will accept her for who and how she is. Sometimes, I don't even give her that. I read so many articles and comments, yet no one has found the answer.
I definitely relate. I have learned to pass to appear NT, and people say "you don't look disabled?" (Those people haven't spent much real time around me LOL) It took me until I was 51 to receive an ASD diagnoses (but I was also born without my Corpus Callosum) I think my ability to cope helped "hide" my Aspergers.ReplyDelete
Hi, I´m 38 and woman...I´m a one to one Spanish teacher as a foreign language (Spanish is my first language)...I was a tourist guide before...anyone who meet me think they have known me for years...I can "read" people very well...I have learned how to talk to every single person in a way that is "the right one" for each one...I´m "a mimic", I can immediately "copy and reflex" my interlocutor traits and it is really helpful for my social interaction and work. But I totally fail to work as soon as an emotional bond is set...I simply can´t do it...my "magic" does not work unless it is a mental relationship with mild emotional engagement, as soon as I feel something deep for someone I can´t play my role anymore and the person with whom I started a "romantic" relationship starts noticing I´m different and odd, I can´t understand his/her feelings and I´m distant or even unable to express feelings at a time. I tend to understand everything mentally and I´m useless getting the emotional side of it when I´m involved whereas I´m perfectly capable of it when I´m not! I haven´t been diagnosed but I have always related myself with Asperger spectrum due to my strong sensitivity about noises, smells, colors, shapes, particular order of things, obsessions with things (like grammar rules and orthography, so I´m a great translator and reviewer) I wish I could understand more about why this happens to me, specially because I have a 20 years old daughter whom I suspect also has many of these traits except the "easy" social skills...Thanks for posting!ReplyDelete
I'm actually crying while im reding this because there are other people out there that know how I feel and why I am so tired all of the time.ReplyDelete
My husband interprets my quiet time at home as me being either angry with him and he isalways asking me what he has done, even after 20 years of marriage. Ever since we moved in togther he has cyled through times of being angry with me or just perplexed at why there is a work me and a home me, something i can't fully explain.
Twenty years of marriage and I told my husband to find a therapist for his issues or else. We both kind of thought it was a personality disorder which wouldn't be off the mark considering the way he was raised. A year of therapy later, his therapist is sure he's an aspie. So many questions answered in that diagnosis and a lot of relief.ReplyDelete
Yes, he hides it well. He's social. He's funny. He's affectionate (but only on his terms.) He writes incredibly expressive poetry (a special interest) and loves being in plays. But he also shuts down, can't express emotion in many of life's contexts, ruminates and perseverates, mind blindness and lack of executive function.
Now, we can plan around these issues. We talk about this weekly. It works for us.
I am 47 and was diagnosed two years ago. It transforms your life when you read the diagnosis in bold letters, but it helps you to organise your life appropriately and to realise it wasn't you fault how you behaved growing up.ReplyDelete
Sadly people close to you do not accept it, but you learn to laugh at yourself once you realise what you are.
I am a 53 year old gay man who has just discovered that I am an Aspie. It is a relief to finally have some self understanding and a label. I have always felt different, but seemed mostly normal with quirks. I was once called 'high strung'. I largely made 'being gay' the reason in my mind for problems that arose from social situations, and some of them were that. As society becomes more accepting of gays, I had to come to terms with some other reason for social hardships I have faced. Misunderstandings, and false-accusations followed me around. I sometimes felt victimized and responded by being a martyr.ReplyDelete
Much of my life has been punctuated with painful loss of friendships, jobs and self esteem. I have always viewed myself as a people person, I am generally intelligent, affable and humorous and always try to be kind and empathetic to others. I consider myself honest and never devious. I for years felt as if I had a 'kick-me' sign on my back as I was a magnet for Narcissists, Sociopaths and other 'mean people' who seemed to target me. I could not understand why. Now I know. Despite my efforts, I was mostly handling people, not truly connecting. I have spent agonizing hours re-living awful events trying to make sense of them. How could someone I cared so much for, gave so much of myself, money and time to just drop me cold over a misunderstanding? The only common-denominator in these situations is me. So, what was I doing wrong? Being too nice, Being too honest? Seeming shifty?
Much of people's actions toward me seem counter-intuative to me. I seemed to get the opposite of what I was trying to create. I was nice to them, but they stabbed me in the back, or slammed me in gossip. I am learning, that people make gut reactions to simple things like my body language, lack of eye contact, verbosity and absolutism. Appearing weak or off-target, or talking too much about myself set me up for some abuse. Sometimes terrible abuse.
Although I have keen senses of color, texture, and patterns which have made me better at my career in design. Emotionally, I live in a black and white world. People are either 'for me, or against me' in this narrow contrast. In reality, there are more gray areas.
Friends come and go, the longest lost friend lasted 25 years then decided she didn't like the way i treated my beloved partner of 21 years after his death from Cancer. This made no sense to me. Treated him? I did exactly what he asked of me after his death. We adored each other and I was devastated by his loss. I think this was just some lame excuse to cover the years of not really understanding me, and finally giving up (or the fact I was no longer able to spoil her). I have grown accustomed to short friendships, and find it hard to expect much more. Fortunately, I have a wonderful partner of 3 years who has ADHD. We are quite the combo, but we love each other, laugh a lot and accept each others eccentricities. I can be myself.
I feel I have to re-learn a lot in order to better cope with others and not be suspicious or judgmental or fearful. This is very tough for me, as there are some challenging people in my family that I must connect with, at least somewhat.
My biggest issue is rebuilding trust, not dragging the past into my current reality and being honest with my limitations and boundaries. Forgiveness was a big first step, forgetting and re-framing is a bigger process.
Neuro-Linguistic Programming has been a big help to me in erasing bad images and replacing them with good ones. I view my past as a photo album, moving and removing photos, editing out situations and people that I do not understand. I have also literally removed photos of people who hurt me from my photo album. Deleting unwanted files from my brain. This keeps my obsession and existential angst at bay and I now have only minor meltdowns, not the big life-threatening ones.
I found this article helpful and informative, it is odd how I often feel I must "credential" myself with both NT's and Aspie's because I was able to find cognitive workarounds for my autistic traits, it was not 100% I still have meltdowns as an adult, but I managed to keep it in and release only within a safe space, often to the detriment of my personal belongings that had strong feelings attached to them, self destructive behaviors with no physical trace as it were. The stereotyping and understanding of what folks consider to be quintessential Aspie traits often leave those of us who have managed to pull off a chameleon act feeling a bit distant from all communities, like we are not quite "autistic enough", even though the facade we developed and put on each and every day wore away at us. I tried to pass as an extrovert for over 30 years, as someone with touch and kinetic synesthesia one would almost say I was riddled with somatoform illness, but given the actual underlying neurology, it was very real physical reactions that became more obvious and detrimental over the years, eventually resulting in a misdiagnosis initially as having a form of ataxia. I cannot even begin to count the number of hours I have spent in front of a mirror practicing facial expressions along with scripting conversations, most folks consider me witting and charming and even comment on my emotive face, well yes it should be, I have invested so much personal time and energy into practicing those expressions, literally training myself to express in-authentic emotion. I am grateful compassion and sympathy were honed in me as a result of my ongoing childhood trauma instead of something worse, because the skill set I developed was scarily close to being what one might term the "secret schizo", so oblivious for so long the harm I was doing to myself trying to force myself to fit into what I understood to be the dominant social paradigms ideal. It is validating to see a post like this, I remember going to work I often wanted to drive my car into a snowbank, not because I was interested in hurting myself, but I was so exhausted all the time from the forced social interaction, that I honestly just wanted to take a nap.ReplyDelete
As another person posted, I to learned to "handle" people, to take control of my surroundings in such a way to bring me relief and think that I was socially adept, when I just practicing a survival skill set and failing to keep my head above water.
Like so many other things in my life, I was gifted with enough native intellect to find creative workarounds for things, I use my tendency to interpret things as literal first as the basis for my sense of humor, I am a non-visualizing Aspie, so I was never good at math or any spacial processing, since I cannot see anything in my minds eye, I learned to sketch things on the back of my eyeballs, using my tactile sense to compensate, and a host of other workarounds, but so many of these things did not come naturally too me, and some of them were downright harmful to me in form of living an inauthentic life under a constant facade. Reading the comments it is nice to know I am not alone being a seeming misfit even amongst fellows on the spectrum.
Thanks for writing this: it sounds like me.ReplyDelete
I think I'm pretty high functioning: I have a postgraduate degree, am respected in my local community and have a high IQ.
But I am also a wreck when it comes to personal interactions. At 40, I've only ever had one serious relationship which lasted two years. We moved in together but it lasted less than a year after that, because I was so exhausted from pretending to be normal. We had no conversation, as I had no idea what to talk about. One day I noticed that my partner would always ask about my day, but I never reciprocated. Apparently it was wrong not to ask, even though I wasn't really interested and the knowledge wouldn't help me. My work history is littered with arguments and disciplinary problems because I have had so little confidence in some of my colleagues, and felt I had to show it.
I have created lots of coping mechanisms to cover up for my failings. I tell people that I am no good with names or faces (I learned that they are more forgiving if you say it before proving it). I am hopelessly disorganised (I rely on my personal assistant to make sure I go where I need to be). I hate eye contact so I remove my glasses when talking to people (I am so long-sighted that I can't see them) or I look at their lips instead of their eyes (if anyone asks, I tell them I have a slight hearing loss - not true but it works as a diversion). I avoid social gatherings, especially of people I do not know (I have often lied about the onset of illness to avoid weddings and birthday parties). I know this is wrong, but it is better than the alternative. My conversation is stilted, my explanations are overlong, but it is vital that people understand what I am saying.
And the meltdowns, oh the meltdowns. I get angry everywhere: at other motorists, at things outside my control, at anything really. I just want to be alone most of the time, as people just get on my nerves and I find them impossible to deal with.
How can I find a new career which allows me to be me, without all the panic and exhausting effort?
Wow. As someone who strongly suspects that he is an adult with Asperger's, I want to thank the author for this story and for everyone who chimed in with a response on this forum. It's crazy that I feel more of a connection with almost all of you than a fair number of people that I've known and let in to my social circle for more than 20 years.ReplyDelete
The toughest thing about being an Aspie is just feeling "off." Not knowing exactly why it is so difficult to be intimate with people and feeling like the loneliest person in the world even with a crowd of people around is depressing and alienating. Trying to pin down how you feel and how you will choose to interact with people or the world at large is a task BEFORE the task of just trying to go out in the world and function like a responsible adult. I don't know how many times I've gone in to work already exhausted because I've had to figure all of that stuff out before I even walk through the door.
The other frustrating and yet still amusing part of this whole thing is being trapped in seemingly endless paradoxes. Seeing the number of posts about people who are good at speech or theater or somehow performing in front of large groups but find it almost terrifyingly hard to deal with small groups of people they don't know or trying to get a date, possess mind-processing capabilities that allow them to see the answers to problems that most people are totally baffled about but not being able to balance a checkbook...it all resonates very deeply with me.
I first suspected that I was on the spectrum about 9 years ago when a coworker of mine with a full-blown autistic child told me about some reading he came across. He simply said, "Dude, I'm not trying to play doctor or tell you what's wrong with you, but you might want to read this." I could only shake my head incredulously when I read the article and thought, "Damn, he nailed it!" I owe him a lot. It has to take a great deal of courage to try offering up information that could help someone you care about when it seems like you're trying to tell them what's wrong with them, but if he wouldn't have done it, I would have gone on trying to grind through life, oblivious to what the problems were even as I suspected deeply that I had them.
The problem that I am having now is trying to find help for people like us in the area, especially since I live in a small town in a rural part of the Midwest. I think I may have just found a therapist who could be a match, but I can't help but wonder if myself and other people like me could benefit from just talking things out in our own group setting. Kind of a 12 Steps without the 12 Steps. That could only enhance the help that I am desperately seeking out. My mother and I have teamed up on this issue trying to find something for at least the past 7 years, and we haven't met with much success. Hopefully, that changes.
Anyway, I'm rambling. Again, thanks for the article and for the posts, folks. Keep up the good fight, and keep telling others about us. The more they know, the more they can accept us and the more we can let everyone else in without fear of rejection, getting used, or being the butt of the joke of the day.
I'm in a finite situation. I'm a classic high functioning, without a diagnosis, but with two twists that make progress impossible. Firstly I developed a physical abnormality with my lip. Every time I try to act normally, people mirror the defect by rubbing, biting and chewing the corresponding spot. This subconscious reaction is seen typically 50 times during a shift at work. Knowing that their brain has identified me as abnormal, is an objective piece of feedback that I can not be normal. They do not know that they are doing it and when questioned, they think that they are doing it for their own reasons.ReplyDelete
The second is that unfortunately I studied deterministic philosophy to a high level. This has led to a catastrophic intellectual desconstruction of reality, with the result that I'm one of only several hundred people in the world that understand the illusory nature of what we term consciousness. When you know that you and everyone around you is just a causal machine, it becomes exponentially impossible to operate as described above, a social actor who manually selects behaviours for specific interactions. Almost without exception, even those with Aspergers, have the 'user illusion' whereby they believe in their own sentience. Few humans, even most materialist philosophers, pursue the causal chain and deconstruct abitrary points, say human identity, on the continuum that is the deterministic matrix of causal relations. When you are autistic, life is hard. When you are forced to act everyday, knowing beforehand that your performance is necessarily inferior to a normal person, or social automaton, because that is what 'normal' relates to, an automatic, non-analytic mechanism that people are. Self awareness and high self monitoring are not traits possessed by 'normal' actors. Asbergers describes a non-conformity of mental equipment which produces an atypical response to the usual programmed output that we call normal. If you have doubts that we do not exist in the way in which we understand it, in order to interact at all, every mental and physical thing must be physical, otherwise it could not interact. Next, no chain of causation stops, there is always a deeper and higher stage in the cause and effect relation. Everything is reducible to a further level of causational explanation, without exception. Therefore free will and every facet of what we mistake as sentience is composed of a prior stage of causal factors and so on ad infitum. Hence when we quote an instance of free will, we arbitrarily stop at a certain point in the causal chain and say, I'm not going to explain any deeper and I'm going to label that level a willed action, without further cause. Since we know thoughts are physical and all physical things are reducible, we know that every thing we call will is just a category mistake, where we've through mental restriction, stopped at a certain level and not wished to explain any deeper. This brings us to a conclusion whereby I know that both 'me' and the 'people' that I am talking too are like Punch and Judy dolls in a show. The trouble is that I'm the only one I know, that realises that it is a show, with rods and a further level of causation behind the curtain, at which almost all other show goers are destined to never peer behind. To have a diagnosis of Aspergers seems trivial when I am sitting in the Doctors chair, thinking that he is just a meat based automaton, with the propensity to act as if it were a social agent with sentience. I miss the illusion that I existed, because fundamentally we are all hard wired to be actors who don't know these things and we are not meant to live without that functional illusion. There is an interesting cross over from determinism to Aspergers, because many appear to grasp or at least sense that typical people are unaware of to what extent their mental life is rigidly automatic and role play based.
The thing that has really surprised me recently is the unconfortable realisation of just how bad people are at understanding those with Aspergers. I've often come clean to people in a way that I think they'll understand, by explaining just how cripplingly shy I am. Almost every time I've done this, it is met with jokey disbelief or complete surprise. It frightens me that people can be so far from what I think is obvious. Lack of eye contact, trouble with communication, odd gait and posture are simply pigeon holed as 'weirdo' behaviours. This simplifying of difference is awful and spiteful in its effect. Despite this, people feel fine labelling others with Aspergers, as a threat to their collective interests. I just am still stunned about how little people attempt to understand about Aspies, they just use a social shorthand to banish them to a controllable category. I have questioned people at work and said, you've seen my eye contact, awkwardness, going bright red, having poor timing and not getting the gist of things or saying something completely not matched to the topic, then what did you think all that was. They think Aspies are quiet and dangerous, weirdos, freaks, a bit odd, but they never attempt to explain our behaviour in terms of what causes it. This lack of understanding is very similar to the 'Fundamental Attribution Error' in Psychology. This describes people tendency to explain their own negative behaviour in terms of external causes and the behaviour of others as being the effect of internal personality traits. He's socially unskilled because of a combination of deterministic causes, becomes, he's weird because that's who he is. The misunderstanding is gigantic and so sad to observe. It's only when you're different that you notice just how intellectually limited most normal people actually are. Their lives are a collection of automated roles and prepared thought responses and for most people they will be born, live and die as actual invariant social machines with not an original thought in their head ever produced. It is so sad for adult Asperger suffers because once you mature, the forgiveness that youth and potential gave you, vanishes and you move imperceptibly in to the 'That weird one' category. I think one of the great challenges of Aspergers is learning that we have to adjust and tolerate the mistakes and limitations of the mainstream populace, not the other way round.ReplyDelete
Love your blog. My daughter was diagnosed with Asperger's at the age of 16. Wondering if you know anyone in the area that offers the same services to teens.ReplyDelete
Hi i can relate to this post totally i was diagnosed with aspergers syndrome when i was 14 years old. but i find im having problems with bottling everything up and not being able to vent i find it easier to talk to random people than my own family and just feel stressed all the time i dont suppose there is any great forums or websites that anyone knows of that could help me with my stress issuesReplyDelete
You pretty much just described my husband. He does have pretty narrow fields of interest and fixates on things until he is almost an expert but most of that research and fixation is done at home where only the kids and I see it. People have disagreed with me for years but I KNOW I'm not making this up. He's a hidden aspie with so much tightly wound anxiety that by the end of the day he is exhausted and just wants to be held.ReplyDelete
This post totally describes me.. I'm a 15 year old boy, and I know that I have aspergers, although I wasn't diagnosed..ReplyDelete
To me, every autistic trait appears when I get tired, until that I am just like a normal person. It's strange because I don't feel that I'm just "acting" to be normal, I really feel normal.. But after a point I get exhausted, and then every autistic trait shows up: I become clumsy, I don't want to talk to others, I just really want to be alone..
After reading this article, from one point it is good to know that I'm not alone feeling like this, but at the same time it really makes me sad when I see that 50 year olds are still struggling with aspergers.. I thought that somehow it will get better..
Screw this whole "aspie" thing, why can't I be normal, like the others.. I ask myself this so often.. It's not worth living this way..
Bless you. I'm an adult female with suspected Asperger's or autism (definitely got the sensory processing disorder regardless), so you probably know how much that "hidden" thing already applies to me. The more professionals like you write about this, the better chance there is for the autistic community at large to be handled correctly.ReplyDelete
And ya know, most of this autism stuff wouldn't even be an issue if people would just mind their manners! Maybe it comes with my having grown up around oddballs with random issues so it's normal to me, but it's not that big a deal adapting to a person's needs. One of my friends is allergic to nuts, so we leave the walnuts out of his cookies. One of my friends stays cold all the time, so we keep an extra blanket out when she comes over. One of my friends has an interesting condition where he has only one bone in his forearm instead of two, so we just twist our arms a little further when he shakes hands to give a full handshake. Being polite and courteous ain't that hard!
I am married to such a spouse as you describe. High-functioning and a 'nice guy' to all who know him. He is much kinder to strangers and acquaintances than he is to me. After work he comes home and barely speaks, he spends the evening recovering from his workday. He does nothing in the home, will not go into a store for needed food unless he has no choice. I do all the shopping, cleaning, laundry, gardening and repairs.ReplyDelete
Living in a relationship of thirty-five years in which I am his 'necessary' caretaker. I have taught him social skills, interpersonal skills and basic social cues.
We do little but necessary things together, he has deep 'social angst' and if I am with him in public, he will humiliate or ridicule so that he feels less anxious within himself in social situations. In stores of any sort, or restaurants, he will have meltdowns, say inappropriate things, his social skills are embarrassing at times and quite basic. He does not take responsibility for any of the things he says or does that are inappropriate. There is little 'cause and effect' in his mind it seems.
He uses his learned social skills to achieve things, they are a mask that covers over his real self. He believes that if he does nice things for acquaintances he will receive in return special treatment. He wants people to admire and appreciate him. Long ago he stopped celebrating holidays, birthdays,and anniversaries, he did not cry or care at his Mother's funeral. She was a necessary caretaker, as I am.
It's quite sad to live with someone who pretended to be different from who he actually is. I would never have married if I'd known who he really was, he used me and set out to do so in a premeditated fashion. After a lifetime of ethical debates, from a to z, there has been little affection or anything anyone might describe as real love. Catering to this man has meant a lifetime of precisely timed meals and constant questions with detailed answers. This kind of life is much more like a controlled, precise captive life for my part. Lacking joy and many of the niceties of an enjoyable life.
So being an introvert = Being autisticReplyDelete
Being a nerd = being autistic
Just lol at this society, bro
My husband of 25 years is in denial but I believe he is an Aspie. He has frequent meltdowns over trivial things, often will not apologize for his behavior and can't understand afterwards why I get so upset. He will only do things he likes to do, repetition is not a problem and he will not speak to people he doesn't know well when we are out in public. I'm frequently embarrassed by the tantrums (he is 49) but often acts like a spoilt child. Like many of the partners above, I feel like his mother instead of a wife. Until recently, he used to drink a lot and would abuse me verbally for hours until I left the house in terror and tears, often in the middle of the night. He is highly intelligent; had a great career for many years as an investment banker but was made redundant several years ago and has not had a paid job for almost five years. I'm at the end of my tether and feel trapped and alone. He doesn't want to talk about or doing anything that doesn't interest him, even just to please me. He has been a good provider and has been faithful but I feel as though we don't connect on any level. I wish I had known these things before we went out. We could not have children so everything is always about him. Feel so sad a lot of the time - it's good to read what others have gone through with their Aspie partners. - thank you!
My husband of 25 years is in denial but I believe he is an Aspie. He has frequent meltdowns over trivial things, often will not apologize for his behavior and can't understand afterwards why I get so upset. He will only do things he likes to do, repetition is not a problem and he will not speak to people he doesn't know well when we are out in public. I'm frequently embarrassed by the tantrums (he is 49) but often acts like a spoilt child. Like many of the partners above, I feel like his mother instead of a wife. Until recently, he used to drink a lot and would abuse me verbally for hours until I left the house in terror and tears, often in the middle of the night. He is highly intelligent; had a great career for many years as an investment banker but was made redundant several years ago and has not had a paid job for almost five years. I'm at the end of my tether and feel trapped and alone. He doesn't want to talk about or doing anything that doesn't interest him, even just to please me. He has been a good provider and has been faithful but I feel as though we don't connect on any level. I wish I had known these things before we went out. We could not have children so everything is always about him. Feel so sad a lot of the time - it's good to read what others have gone through with their Aspie partners. - thank you!
52 year plus a few clicks here ... I was deemed a Little Professor by my folks at age 4. Mastered many intellectual pursuits and even was fair to midland in sports prior to losing interest in late Jr. High. Was on the "advanced" track through secondary schooling including a few AP courses. Did OK in college (caveat - in a hard science, so factor accordingly) and the main issue was retention of info from the live lectures (typical Aspie I suppose). Looking back, serious difficulties started about age 9 ... first bullying and fighting clear into high school (luckily did not end up in jail for mayhem or worse) ... then minor recreational chemicals and binge drinking ... then later a series of problematic relationships (including current nearly failed marriage) akin to hopping teetering rocks across a river.ReplyDelete
I can completely relate to the draining nature of dealing with external reality (job, social situations, personal financial and retail interactions, etc). This is compounded my marriage to someone from a high context society that terribly discriminates against people with any sort of intellectual challenges / cognitive impairments. In her homeland such people if from a rich background end up hidden away on the family estate and if poor end up on the street dying young. Dx for me made things even worse since it gave my wife a label and one that corresponded with a type of untouchable in her world view.
I wish I knew at 25 what I know now (classic thought but even more so given the curse of being a hidden Autistic).
My wife has suffered with ASD throughout her career. For a number of reasons, we always assumed her difficulties in work situations was due to the way she was raised, which left her deeply inexperienced with and often entirely unaware of most of the social signals, icons and situations that neurotypical people take for granted. Despite this, she is able to socialise well in most situations. Her honesty makes people trust her, She genuinely hears and sees what and how people express themselves, because she does not start with preconceptions ever.ReplyDelete
This makes her a superb sales person, who regularly wins new customers for her employer. However, she struggles in groups and is not able to speak well under pressure. As a result she qualified but could never practice law and has in many work situations been bullied and abused. It is always hard, but she has been so determined. No employer has ever known about her ASD, which we only recognised in January. No help at all from our GP except advice that my wife read Daniel Goleman's Emotional Intelligence. She has done now and it has helped her a lot, but she deserves better
This rings so true with me that it immediately brought tears to my eyes. I feel just like Joe. I discovered that I was an Aspie at 40, 5 years after my daughter was diagnosed. With this I know I'm not alone in my Journey. It gets really really tiring and this helps me keep going.ReplyDelete
This very nearly describes my husband. He hides it 99% of the time but occasionally gives employers tiny glimpses of his AS side and they start to suspect and it always ends in his dismissal. He is now formally diagnosed following our son's diagnosis and it was due to me giving input as to his behaviour, as he would not have received the diagnosis otherwise.ReplyDelete
I do puzzle at one thing, why when he knows a fact to be true, can he not stand up for himself? EG. He knows somebody said something to him yet he cannot stand up to that person and say you said this to me, at best he uses terms like, "I think you said this to me" at worst he lets them say that they have never said anything to him. He seems to be an easy target! He can't seem able to ask for time off that he is due, he can't leave a meeting, even when it is ended until everyone has finished informally chatting and having coffee even if it takes him way past his finishing time and he has an appointment to attend, (although he does not join in with the chatting). It very much puzzles me as the books I have do not cover this kind of behaviour. Does anyone else feel the same as my husband in these situations? Any explanations to help me understand it would be most helpful as my husband just gets mad at himself for being that way, rather than explaining or talking to me about it, so I do not like to go on about it.
That's rubbish..they suspect what? Then they dismiss him? What jobs has he been doing then?ReplyDelete
In regards to a previous post on not standing up for oneself....I think we need to look back at childhood and how we are often enculturated and bullied by the dominant paradigm. As a young child I was very assertive and confident in my facts and knowledge for example. But one can only take so much bullying, so many misunderstandings, before the painful repercussions of being misunderstood outweigh the gains of providing factual information to others. The AS tendency to give facts and data, to offer workarounds instead of simple comfort and empathy is often misunderstood and we are labeled and judged by others for this difference. Many in our culture are trained to take offense to being corrected, like it is a personal attack on them and the pressure to use an authoritative voice and never been seen as wrong results in gut reflex reactions, where as for those of us inherently logical by nature, the intent is not to offend, unless we are so damaged and jaded that we have to use that in an attempt to reinforce a sense of positive self-identity, but to share information ala a dialectical approach instead. In many ways you can see in this difference the battle between a Rhetorical world view and a Dialectical one, one seeks to "win" an argument, the other seeks to inform and find the underlying truth, and they are very uncomfortable bed fellows, in fact very threatening, just look at what happened to the father of the Dialectic, Socrates when he went up against the rhetoric wielding sophists of his time. So, this difference in outlook, something with no moral connotation at all, because one cannot be held accountable for how their brain is wired at birth, no more so than the color of their skin or socio-economic status one is born into, often becomes a form a judgment, and then that is made worse through bullying, through the school to prison pipeline, and a host of other ways to build a hierarchy based on belief in one's superiority that cannot actually have any truth or morality to it, it is simple neurological difference, and that difference is what helps fuel progress. To this day, I find it very hard to speak my mind, because it alienates others, people assume ego, especially in the written word where I cannot take in certain social cues to tailor my responses, it seems to me that it is a survival tactic that those of us with the intellectual flexibility often develop to protect ourselves from harm and ridicule, to attempt to blend in with society, when is fact we are so very different. This stress and pressure also feeds into our meltdowns, trying to keep things so tightly controlled all the time, to exist in the here and now with a bunch of fairly mundane people discussing things we find to be frivolous or inane. The greatest fight of my life is still going on right now, as I work to undue reflexive reactions and the damage done from chronic bullying at home, school, and church as a child, trying to speak my mind and be ok with the fact that some folks will not like me as a result. Food for thought here at the very least.ReplyDelete
Thank you for not only recognizing this, but writing about it. I have lived my whole life as an actor. I would watch teenage tv shows to see how everyone else acted in situations and I would translate that into my interactions with others. No one would have known I had AS. I knew something was different about me. I wasn't diagnosed until my mid 30s. My psychiatrist doesn't believe that I have it because I make eye contact, am very social with her, etc. But I'm acting. It has become the fake me. As a young adult I would get so tired of acting, I would stay in bed for days - exhausted. My hope is that, along with the "people with AS have no empathy", researchers would finally "clue into" this aspect of an adult with AS.ReplyDelete
There for a minute I thought you were MY therapist talking about me! Welcome world to the mask of the autistic mind using his genius to remain undetected! There are more of us out there than you think!ReplyDelete
"Navigating minefields" I like it. It describes how each day feels pretty accurately. I learned to hide it so well without even realizing it that it took someone whose child is autistic to notice something was off when I started living with my dad and her. Thankfully, my dad started paying attention and helped me get an official diagnosis (my G.P. said an official diagnosis wouldn't help and should just join a club or something...I think it's time for a new doctor).ReplyDelete
Since receiving the diagnosis, I've paid attention to my reactions to people and their reactions to me and just why I need so much recharging time. I learned to read between the lines (most of the time), what topics are safe to talk about, keep my opinions to myself around acquaintances, act outgoing, and smile a lot. I'm glad that I'm not the only one who does this and it's nice to know that my recharge time isn't 100% because of my introverted personality.
What a reflection on a beautifully written initial post to strike a chord with so many people since 2012! I have a friend who ticks all the boxes of an Aspie, but it's never talked about, so I have no idea if he's been diagnosed or not. He's very intelligent, extremely well spoken, successful in his career, a workaholic, reads people constantly, has an issue with touch(hugs), says inappropriate things all the time, falls asleep when we are visiting (I feel bad we exhaust him with socialising!) etc etc.ReplyDelete
My problem is I think he's amazing and appreciate him for many of his qualities, but am struggling to remain being his friend due to the crap he puts me through. Every now and then he has a meltdown for no apparent reason, always via email, which will start with him calling me f*cking stupid for eg, repeatedly until I let him know he's upsetting me, but rather than apologising at that point the swearing and insults escalate until I end up so upset I tell him I want nothing more to do with him until he stops and apologises. He processes overnight and apologises the next day. When I next see him its like it never happened, but I am still scarred by whatever the insults were at that time.
He suffered some pretty bad depression last month, but rather than speak to his wife, he reached out to me to help him through it. He's also cried and confided in me a few times over the years when he's been upset where he doesn't do that with others. My point being, I think he likes having me around, but I do not understand why he gets so nasty so quickly for no apparent reason?? How does he not see the consequences his words have? Even if he doesn't have the capacity to 'care', does he not see I will have nothing to do with him if it continues?
Thank you for this. I have recently been diagnosed HFA at 46 after a lifetime of issues with panic, anxiety and depression. Nobody thought to look toward autism-no therapist or teacher or anyone. When I think of the years of angst it would have relieved in understanding this important difference in my functioning---the coping skills I could have applied before dark times rolled in instead of being left isolated and ostracized and feeling I was crazy. I am grateful to have an excellent Dr---finally, and and learning how to live in light of the diagnosis, which had turned out to be a kind of instruction book.ReplyDelete
In March 2013, I finally received my diagnosis of Asperger's Syndrome. I was one month away from my 59th birthday. There are a lot of things I can relate to. There are many more things than since before the diagnosis that I am struggling with. Wonder if this is typical with Asperger sufferers...ReplyDelete
My mum said the same about me, and I no longer contact her. I find it tough to speak to her.ReplyDelete
I am a 44yr old female. I found out this year that my son is on the spectrum well both actually. Finding out through a diagnose for my son was like a penny dropping for myself. I new when I was younger that I just didnt fit in. I put it down to just being shy. I have friends Just a small handful that have been my friends for over 27yrs. I think they have remained that way because they just understand me. They dont expect anything from me. If I dont ring or talk to them for mnths they are fine with that we can pick up in our relationship were we left off. I really want to socialize more but find it very draining at times and only have a short attention span. I am great at covering up the fact Im on the spectrum to. When I finally realized what was unique about myself and shared it with family and friends I Think they thought I was joking because I cover it up so well. I find myself like other aspies strongly attached to one or two interests and focus really well on them but struggle to find interest in anything else. Work wise I am currently trying to establish a homewares business. I want to open up a bricks and mortor store but worry it will be to much for me to cope with. I have found it very had to work in a public situation but enjoy running my business from the markets once a week. In the past I worked as a sole trader and enjoyed being at home working and getting paid the thought of being in a work place having someone watch over me makes me feel stressed out. I have been in that situation in the past and didnt last long in those positions and then found factory work and that seemed to be ok. Hence why I just want my own business.ReplyDelete
I do find myself on many occasions finding the negative in many situations. With my marriage, with finding work, moving away from a place I loved to another state. Im not sure if this is normal behaviour on the spectrum. I wished I could stop these feelings. I just want to feel normal..if there is such a thing.
This is me to a large degree & now I'm wondering if it's my husband too. And a psychiatrist I've seen once said, "you don't have any stemming," & when I told her how isolated I felt as a child, she said, "well you wouldn't have cared if you had aspergers". Where does one go for proper diagnosis?ReplyDelete
Yes, I am THAT guy (too)! What a long hard road it has been.ReplyDelete
I've been researching Asperger's for months, reading books and characteristics and taking online tests... And I'm completely convinced now that I have Asperger's. And what a difference it would have made to have known this as a child! It makes me angry to think about it, even as I feel relief at the realization that all along, I've just been the person I was born to be. All that struggling to change, to understand, to connect and manage and be socially competent... And I might have just relaxed and said, there it is. That's my brain.ReplyDelete
I've learned so many ways to cope, as have all of you. I've practiced communication skills that I now teach to others. My profession leads others to assume that I'm socially highly functional. They have no idea what it takes for me to attend a social event, or speak to someone I don't know. Or how scary friendships can feel - the anxiety I get about what to say or not say - the recurring fear that I've lost rapport, been too hard to handle or offended someone, so that now they don't want to be friends anymore. And even if I know it's not true, it doesn't register in my bones, and it's hard to trust that it's ok.
My experience has been so hard at times, so painful, that I'm truly offended by the adjective "mild". There's nothing mild about any of this. Now, "hidden" I can relate to. Alot.
I appreciate everyone's shares, and hope you'll all acknowledge yourselves for the work and persistence and courage you've had to show just to live in this world. Do what you must - but always, recognize who you are, and be that. Most of the pain of autism comes from living with others who don't understand. But we can know ourselves. We were born to feel joy, to explore, and feel loved. Let's do that.
Thank you for this page. I am not on the spectrum, but I am looking for advice on approaching someone I believe is.ReplyDelete
I have a good friend who is in his 50's and whom I *strongly* suspect has Aspergers. I want so much to broach this topic with him, but I am given to understand by other things I have read that anyone else bringing it up might well be extremely upsetting to him, even if (or especially if) he has wondered as much himself; it would only be forgivable (by him) if the person bringing it up really had no choice--such as a spouse or child or mother. I am not any of those things, but I love him and I hurt for him as I watch him suffer in what seems overwhelmingly to me to be the same ways described here and elsewhere.
I don't know if he has considered the possibility of Aspergers, and I can make a great case that he absolutely has NOT considered it. There is his age putting him to be an adult when proper testing for AS began. He is an academic, so it's easy for him to shut out the rest of the world and still be quite successful, but also quite social in spurts of time, so it's easy to hide not only from others, but himself. He has no children to "recognize himself" in. He was married many years ago, and it was a disaster, with his ex complaining of the same behaviors most aspies' spouses complain about. And in his one long-term relationship since his marriage--which went on for many years--they never even lived together, despite residing in the same town and having no other barriers to taking that next logical step, and I know he loved her.
He's at a point in his life where he's desperately seeking fulfillment and answers, and I want to talk about this with him. But I fear alienating him, and, worse, that the resulting hurt could cause him to AVOID exploring this possibility. I don't think there's anyone else in his life who would bring this up.
Any advice is very much appreciated. Thank you, and god bless all of you. It takes courage to talk about this and to KEEP ON talking about it.
Hello. Anonymous, sit down and watch "Adam" with your friend. I'm pretty sure he's gonna pick up on that as he sounds witty.ReplyDelete
I am a male and I'm autistic myself and my case is pretty bad. Trying to be sociable is so bad for me I have already developed gastritis, colitis, carpal tunnel and chronic neck pain, and I've just turned 24. Because of how I was raised, I've learned that I should always be nice to people, even if that meant being emotionally hurt and abused.
Now I'm paying the price and psychoanalisis, psychology, psychiatry, none of those can help me. I don't know what else to turn to. I'm running out of options.
I feel so lost and sad. How am I gonna make it?
I can't even count the number of people - including some Aspie friends - who insist there's no way I'm on the spectrum because I'm missing some of the stereotypical symptoms, but when I read things like this, I'm so certain. My family of origin was a system of abuse, and I had to learn to fake a lot around social interactions as a survival tactic. Growing up in the '70s & early '80s, there was no way anybody would have recognized it before I developed those coping strategies.ReplyDelete
I think my partner has Asbergers (mild but still very difficult in relationship) - and no one has believed me when I raised it because he is very sociable and easygoing on the surface. Now I've finally figured out whats the problem after ten years together -I feel excited and hopeful as well as scared. I need a lot of reassurance as Ive got insecurities too, at other end of spectrum. I've been devastated by this man who was so wonderful at the beginning and so passionate, and now cannot show any affecton , or initiate connection or give compliments.ReplyDelete
I have found out about RDI by Steve Gotstein , thats a cutting edge approach to this, and keen to try but my partner has felt so useless in the regular therapy we tried, that I think he might not be willing.
I feel determined to have a go at making it work and getting right kind of help. This man is the one man I've known as honest and full of integrity, a wonderful father and not judgemental. I imagine if we can work out a way to be together we'll be such great complements to each other, I may be "neurotypical" but also have huge trauma and difficulties (overly emotional)and Im not always easy, so here's hoping we can learn some kind of rewiring for love! Just not sure if my partner would think its worth it now.
I can relate to some of this, I am diognosed with ASD and unfortunately my partner is the one who suffers the most with my being distant and I also feel exhausted when I'm forced to face being social but I avoid social interaction as much as I can as I don't like it but also don't like how I feel afterwardsReplyDelete
That's me too. I am a golf professional, and have been one since 1992, yet until 2012 I had no idea why my life was/is not working for me. The diagnosis was after a year or so a relief, as I now know am not to blame for a lifelong collection of social and edcuational/career disasters.ReplyDelete
Sadly, due to our invisible condition named Autism, we are considered to be acting up on purpose, the fight goes on!
What is the difference between somebody who has PTSD, social anxiety or shy and not confident?ReplyDelete
In order to be part of the society, you have to destroy your personality and build yourself another one.ReplyDelete
You have to pretend to laugh, pretend to feel emotions you don't feel to make some friends.
Of course, like you said, you won't make close friends like this.
You even have to change the way you are thinking in order to be able to progress at school.
Like I just said, you have to completely break what you are. And only then, you will get a good job and some social life.
However, I won't lie. This process, which take several years, is
absurdly painful and will let sequels like inner hate of humanity and will not erase the disease. It will hide it perfectly.
Finally, when you're done, when you chenged, it's easier =)
I will add that I'm French so please excuse my English. Also, In have never been diagnotiqued as a child, and that led me to this. We Aspies just doesn't exist in France after all.
I hope that my comment will help you in your research and that my little advice will help YOU, reader, if you are in my case.
This article was a revelation.. This was me for years, until last year when I had a breakdown, went for CBT was referred to Autism Services and a year later got the diagnosis of High Func Autism.ReplyDelete
I'm really glad I stumbled upon this and thank you so much for writing it out. I notice so much about myself in what's written here. Throughout elementary school middle school high school and college I always was surrounded by a ton of people and had many social opportunities but I never seemed to connect with anyone special. It really did feel like everyone knew me but nobody really was close to me. I learned at a young age how to be popular and well liked...I would just observe and mimic the phrases and actions of other kids. I have always put a lot of effort into how I dress...and my wardrobe basically has evolved from a long process of selecting what the best looking and most attractive outfits have been to other people.ReplyDelete
Has anyone ever experienced people talking about them like they are some form of entertainment? I have overheard people before saying, "oh James never did that with us...or oh James never told me that"...it makes me really uncomfortable and angry.
This is me! At 60 years old AND having worked with special needs kiddos the light bulb is finally on...now to figure out how to do a better job dealing with it. 👍🏻ReplyDelete
To people wondering how they can approach those on the spectrum. My advice is: DON'T. Leave them be. I joke. But seriously, don't approach me. I'm much happier when I'm not around anyone at all. :)ReplyDelete
I explain: sometimes people try to help and be "compassionate" and "understanding" by approaching us in the corner, sitting by ourselves, and we can tell RIGHT AWAY that you are there because our behavior is bothering YOU. Our doing nothing and being eccentric annoys the hell outta you. This makes us feel even weirder and more "guilty" of existing. That being said, though, each experience is unique.
I, personally, don't like how people look at me, approach me, talk to me, ask me things. I like to be left alone. Maybe your son/boyfriend/girlfriend/dad is like that too. So take a hint. If they wanna talk to you or be around you, they will. Don't push.