Living with Asperger’s personal stories part 1
In today’s article we have the first of the personal stories. This article comes to us from Nancy, who has shared her experience with Asperger’s. I’m sure some of you can relate to the experiences Nancy shares about and will find it helpful.
My name is Nancy. I’m 70 years old. Ever since I started hearing about Asperger’s Syndrome, I’ve wondered if that was my problem. I have a very high IQ, especially in non-verbal areas, and I’ve lived with some intense social anxiety. When I took your test a few months ago, I scored on the low end of AS, but above borderline (23 or 24, I don’t remember).
I remember clearly when I stopped looking people in the eye. I was maybe 3 or 4. When I looked in people’s eyes, I saw the anger, hatred, selfishness, and other negative feelings there. People are not all negative feelings, but what I saw really frightened me. So I stopped looking. I looked at their mouths instead to focus on what they were saying and not what they were feeling. Just in the past couple years, I asked a couple friends if they noticed that I rarely looked them in the eye. They said they hadn’t noticed. Maybe people don’t get out from inside their heads to see what others are actually doing.
I grew up with lots of social anxiety, social paranoia. I had trouble talking with people, always felt they didn’t like me, always knew they didn’t understand me. Always interested in the workings of the mind (why was I so strange and anxious?), I majored in psychology in college and got a Master’s degree in experimental social psychology. I was in a Ph.D. program, but left with the Masters because I was expected to create hypotheses about why people behave the way they do, yet I felt I didn’t really understand people.
I began working and eventually met an astrologer with whom I became friends. He taught me astrology over a period of years. That really helped me a lot, because it gave me a tool for understanding people. I could mathematically calculate a person’s chart and see all the factors in their personality and how those factors interrelated and how they interrelated with me and why people did the things they did. I think I learned more psychology through astrology than I ever did in college. Now I don’t calculate charts much anymore, but I’ve had enough experience reading them that I can understand the various factors that may interrelate to create any given personality — I understand the possibilities.
I dabbled in Tarot for a while, which also helped me. As a child, along with reading people’s feelings in their eyes, I felt I could also know what they were thinking. But everyone denied it. That left me really confused. Through reading Tarot, I learned that (1) people will never admit that you know what they’re thinking (maybe because it invades their personal space and privacy?) and (2) much of the time people don’t even know what they’re thinking. The first two cards in the Tarot layout concern the question being asked. When I would read the question, people would tell me I was wrong, that was not their question. They would deny even thinking about that topic. If I pushed and pushed, they would eventually admit that it was in the back of their mind, but insist that it wasn’t relevant. Yet how often does what is in the back of the mind determine what the person expresses? Eventually I quit reading Tarot—too hard to communicate with the people.
I don’t know if being able to read people’s thoughts and feelings is AS or not. I only do it to help myself understand people so I can relate better. But that was part of what led me onto a spiritual path in my life. My difficulty in social situations, the anxiety it causes, has led me to lead a very solitary life. I need large amounts of time in solitude to decompress after social interactions. But on the spiritual path, you need to spend a lot of time in solitude in order to progress. Once I realized my need for solitude, I actively pursued it and learned to really enjoy being alone. And of course, that allows me to make brief forays into socializing with others without coming all unglued.
I have heard that autistic children often relate better with animals than with humans. I think I understand that. Animals relate in a straightforward manner, not playing games, not pretending to be something they are not, not demanding that you feed their ego or their idea of how you should relate. Humans, on the other hand, are all those things that animals are not. I think humans have a lot to learn about relating in a straightforward manner. They would be a lot less confusing and intimidating that way.
I retired from work a couple years ago. Work life was hard for me, mainly because of the social situations, but I had my solitude to unwind and recharge. Work was also difficult because of my need for mental stimulation. I didn’t work any job for a long time. After a year or so, I’d start asking myself if that was all there was for the rest of my life, and I’d have to leave, try something different that would challenge me. Maybe that’s the high IQ part of AS—my mind needs constant stimulation. But I managed to support myself throughout my adult life, not well, but I got by. At this point in my life, I can handle most social situations, and I feel free, if I don’t feel comfortable, to leave the situation and be alone. If people don’t like it, too bad, that’s how I am.
I don’t think that having family and friends and a busy social life are necessarily the greatest things in life or what we all should do. If I have a high IQ and everybody else has an average IQ, am I to assume they know best? It was hard for me to break away from that mold of following the majority, and that mold is fine for the people who want it, but it’s not necessarily the best way. Through spending so much time alone, I’ve learned to do things myself, and I’ve gained a great deal of self-confidence and self-assurance that I can provide for and take care of myself. I think, especially as a woman, that that is more important than having family or a great social life. I’ve learned to be comfortable with who I am.
Nancy Dechter graduated with a B.A. in Psychology from Chatham College and an M.A. in experimental social Psychology from the the University of Texas in Austin. She studied Astrology and Tarot at Manly P. Hall’s Philosophical Research Society in Los Angeles.
Thank you Nancy,
,
Like you, I never had a “label” growing up. My Mom, who I suspected had AS as well, told me that I was always “different”. I guess that I thought that was a put-down, although it wasn’t designed to be. Throughout my life, I had social issues, and I could not establish a long term relationship with anyone until college. I never had problems getting dates (I’m male), but I did have problems getting a second date. I had a friend call one of my first dates (while I listened quietly on the other phone) to see how the date went. I couldn’t believe how she could be so negative about it – “what IS his problem?” I thought that it was a good first-time date, but I still wanted some intervention before asking her out again (I didn’t).
I’ve been moderately successful, being drafted out of college, but using the GI Bill to get my MBA. After one year with a major oil company, I was promoted to the corporate offices in Houston, Texas. After a year and a half there, I took a lateral assignment in the Northeast. I accepted another promotion, but was later told that I was the victim of “budget reduction”. It seems that 5-6 years is my normal term with any company. I’ve been blamed for being too stubborn, too inflexible, and I couldn’t see (or wouldn’t see) the “handwriting on the wall”. I would be on the edge of losing my job, and just not “see” it.
I’ve been married to my wife for 38 years next month. According to astrology, our marriage was doomed from the start (we have the same sign). However, we’ve raised 3 healthy boys, although one definitely has AS. I’m convinced, however, that when he finds his niche (he’s 28 now), he’ll be successful. Afterall, how do you measure success in life? I say it’s whatever that makes you happy, as long as it doesn’t have a neagative effect on others.
Like the typical AS, I function well by myself. Could the “lone wolf” have been the original AS?
Thanks again, Nancy, for sharing your story.
Hallo,
My name is johann and i was recently diagnosed with AS. I also study Psicology in holland and I am extremely interested in how people interact with each other. I feel totally identified with your story, it’s like you’re speaking for me.
The only diference Is that I managed to be alone, find my peace and to understand humans in a quite young age. Although I did had a moment when I was a really good camaleon and that’s why I now know how they think/feel and why do they do it in that way.
Now I’m 27 years old but I feel really old in my head. I still have a lot of years in front of me but I’m really scared of living them because I feel much more developed. This is affecting me a lot because I stil have to interact with humans to for being able to study/work but I’m tired of it, it absorbes all my energy!
Every day I go to the central library and I work in some investigations I’m doing about how people think. My dream is to make people think about what really matters in life like Gandhi did. I want people to stop and feel what we are and to wonder about what we want and why.
Do you think I it will be possible for me to be happy while being so young, thinking like a much more developed person (specialy in the espiritual and emotional area), also with a high IQ but still having to interact with others the rest of my life? Do you have any tips?
Thanks a lot for your words,
Johann R.
Johann R. I was wondering what you did to get diagnosed. I have a son who just turned 29 and I am positive he has AS. He was diagnosed when he was 6 as Emotionally Handicapped. They just kept saying that he was extremely shy and OCD. I am hoping one day that he can talk to people face to face and not by texting or on the internet. He still lives with me and never gets hired because he won’t talk during an interview…I am at my wits end. I won’t be around forever.
Hi Cynthia,
I was never diagnosed. Aspergers didn’t exist as a condition when I was younger. I took the test on the Aspergers Test Site recently and scored in the Aspergers range. The more I read about the symptoms of the condition, the more of my life it explained. Fortunately, I don’t seem to have a severe case, so I was able to cope with my problems. Not having been formally diagnosed by somebody, I’m not aware of what resources there are. There must be some organizations that can help you find help. I would start by searching the internet for Aspergers support groups and go from there. Good luck to you and your son!
Hi, I’ve suffered in the same way & had a similar life to the lady writing this story. My Son’s Autistic with a diagnosis & he’s the only person I get on with well. I’m really isolated these days too. But the Maudsley Hospital London, decided I haven’t got Aspergers just ‘Social phobia, which is ridiculous, as I’m affected by it when I’m on my own! The next time I went for another test, because of the first test, the woman at the Maudsley wrote a scathing report, virtually calling me a degenerate, needing rehab. When I complained, an investigation was started. My Son even wrote me a letter of support, which they ‘lost’. Now its all gone quiet, & I just know, they will never give me a diagnosis, or even apologise for all the untruths & terrible things written in that ‘report’.
WOW!!! Thank you so much for sharing your story! The whole time I was reading it, I was wondering if this was something I had written and how did you get a hold of it? 😉 I have been going to counseling and seeking help since I turned 16 and no one seems to know what’s wrong with me or how to help me. I finally just got help for my severe depression with the help of Wellbutrin two years ago. Anxiety is another story. I have major social anxiety, always have. I pull my eyelashes out, pick my skin, and isolate myself because it is my only comfort zone. And, my dogs were always my best friends when I was little and I would actually look them in the eyes and talk to them and feel them talking back to me and understanding me while no one else in the world ever could. I took the test on this site about a year ago. My oldest son was evaluated for Aspergers when he was about two or three but he’s almost 17 now so they said the testing was inconclusive but it was a new thing back then. He had every symptom in the book and was extremely severe. I have no idea how they could say it was inconclusive. He needed speech therapy, he cried all of the time, never slept, hated to be touched, hated different textures, wouldn’t make eye contact, didn’t play with toys or other kids, and he is a genius. So, since I have was doing some research on him I ran into this website. As I was reading these stories I was so blown away by how close to home everything hit with me. So I have been trying to convince my therapist, neuropsychologist, and my psychiatrist that I have finally discovered what my life long problems have come from but they are not agreeing with me. They say that I am too smart and too good at reading people because I am able to be a chameleon in order to please everyone that I have to be around. But after I am done being around people, I am completely drained because I had to fake being someone I was not, yet I still didn’t know who I was at the end of the day. Alcohol has been my only solution to being able to feel like I am being myself and able to be around people and be confident and happy. Yet obviously, it has caused a load of issues for me and now that I am not drinking much anymore I don’t go out at all anymore. I started drinking at 16 and now I’m 40 and completely isolated. I feel like everything I have learned in life I taught myself and learned the hard way. I am a straight A student because of my OCD and need for perfection, but my memory is shot and there is something wrong with my learning ability so I feel really stupid but I look smart. I could go on and on and wasn’t planning on going on and on but anyhow I just wanted to say thank you and I completely understand where you are coming from!
~Kim
I really enjoyed reading what Nancy has written here and totally agree with her when it comes to people. So often the expression in their naked eye balls is highly unpleasant, a true reflection of their feelings in that moment and a reflection of their heart/personality overall. So often people are totally unaware of what they are revealing and will deny it if you tell them what you know because you have read it in their eyes. Also, other people who are familiar with that individual would disagree with your opinion and, because one makes themselves look bad by talking about others in supposedly negative (but actually simply neutral and accurate) terms, you learn early on to keep these views to yourself. And second-guessing yourself always leads to kicking yourself in the end, if you go with other people’s assessment of someone and let them into your life, only to sorely regret it later when you realise the damage they have done to you.
On the other hand, in order to get along with others, an Asperger’s individual (as I am- officially diagnosed at age 50) must at all times watch their tone of voice, the rapidity or otherwise of their speech, the expression on their face (as opposed to in their eyes, although you have to do the right amount of eye contact otherwise it can be read by others as a sign of a guilty conscience), the use of their entire body’s language (to hug or not to hug? Oh no, they want to shake my hand and if I don’t perform this in a certain way they will assume negative things about my character, especially if my hands are sweaty), their complete physiology in general (don’t want to sweat too much; people often think that is a sign of anxiety) and so on. It’s exhausting because it is a complex task you are consciously and constantly performing purely to be able to relate to others (meaning Neuro-Typicals) and results in a need to spend plenty of time alone in order to regroup mentally. It is frustrating when so many people are not what they seem and you are most comfortable dealing with straightforward folk who have no agendas or ulterior motives.
Please have more of these personal stories 🙂
My name is Maree. I am so relieved, to be able to relate to every one of your stories and experiences. I have also felt different all my life and the doctors, psychologists and pshchiartists I have seen also say that I am not Asperpergers because I care too much about others. However like Kim, interacting with others completely drains me because I too hide who I really am. I hate being social, I pick at my skin, I feel different to others, I just don’t really understand how other people actually operate and this makes it especially difficult in the workplace. As a child I used to not sleep I would be up drawing on the wall. I used to rock and bang my head against the wall to get to sleep when I was a child. I gave up the rocking in my early 20’s. I had freinds but not lasting ones and I enjoyed the company of animals to people. I was an A student it came easy to me as I had a photographic memory. I became a teacher but only lasted 3 years at that, I loved the children but could not handle the parents. Saying that as an adult I do have a few close friends although I spend more quality time with them rather than quantity. I have had a partner for 18 years now and we don’t have children because I just would not be able to cope with children because of my anxiety and OCD. Luckily he has a daughter from a previous marriage and she is now married and has children which is wonderful. My nephew who is 3 is currently being tested for Aspergers. Originally they though he just had anxiety/OCD although a blind man could see he has Aspergers and I relate to him so well on so many levels. He lights up when he sees me, I think he knows I understand him. He is obsessed with circles and more recently moved onto pipes (because they are circles) and how they all connect together. He is a delight. The reading I have done also seems to suggest that it is genetic and so this also makes me think that this is what I have. So I have decided to get a referral to get a diagnosis so then I can stop trying to get treatment for what is wrong with me and just accept that I am who I am and be happy with that. I am just hoping it does not turn out to be a disaster as it was for Juliette ( I feel for you ). Johann I can totally relate to you as well. In regards to tips I am not sure I have any other than to say, hang in there, it does get a little easier as you find your own way to interact with others. It sounds to me that you are a very successful young man and you will find your niche and people who love you for who you are. I think you have a lot to contribute and I expect you will succeed in anything you put your mind to. In respect of the energy drain in interacting with others I have found after many years to just try and focus on my own needs and spend more time by myself because I need it. I still push myself to go to social events like weddings etc. even though I try and come up with multiple reasons why I can’t attend and I stress about going to them right up to the time it comes to go. Like Kim I used alcohol to get through these events. I think just understanding who you are and why you act as you do and accepting yourself may help. In that respect you are way ahead of me in understanding yourself.Thank you every one for sharing your experiences. Take care.
I really wish I could find a psychologist who can help me. All they do here in the US is diagnose the adults with depression, prescribe meds, and push them out the door. As for everybody’s stories all over the web on Asperger’s, I can so relate. I wish doctors would understand that I am not looking for a free handout. I would just like some help where I can last longer than two years at a jobsite (note: I have not lasted longer than two years anywhere). I have always felt that I was looking into the crowd studying them and trying to figure out where to fit in and who would understand be the best without looking obvious. I just don’t fit in anywhere and solitude along with music is my happy place. I do not wish to be part of the majority when the right to be an individual is more important. However, I do like to get out and have some social interaction once a week. For me, it seems when social interactions happen, they happen all at once (1-4 meetups in a week) once every 4-6 months. Never did well in school (got left behind). It is just simply frustrating.
Hi,
I had to remind myself to say hi, and not just barge in and throw myself out there. I have not been officially diagnosed with AS. I just recently started questioning myself, as opposed to everyone else. This is not an admission to “myself” being at fault, or inferior to the NT population. That idea is absurd to say the least. No offense to NT’s. But the reason I felt the need to comment on this story is due to the fact that, Nancy had learned early on that making eye contact gave her a peak at the dark side that lies within others. I don’t remember when I stopped looking at people’s faces at all, I was very young. Prior to that my mother told me as an infant that I would give people dirty looks. She said she thought I was far more intelligent than people could imagine, and that perhaps I thought they were behaving inappropriately, with their cooing. Who knows, I think I honestly felt the same negativity from birth, that caused me to look at my feet all the way through high school.
I have little control of my brutal honesty. If it’s something simple like a question about someone’s appearance, I can wing it, but often with discomfort if I am not being totally truthful. I sometimes think they can detect my white lie. (As if there were any gray matter there- A lie is a lie) I suppose since I see people as “People” and not labels, or superior or inferior, I am constantly irritated by people who either think they are superior, or have insecurity issues. (The latter being more common I dare think)
I can and have had to look at people’s faces as an adult, in order to hold a job, and to care for my children. I have actually learned to tune them out entirely. Sometimes finding it hard to even take note of their replies. But my problem is still, that I can FEEL hat people are feeling, no matter what their mouths are saying. I feel everyone when I am in public, people I am not even talking to, nor know. I supposed if I tried I could feel something positive? I am not sure, because I don’t try to feel anyone under any circumstance, I just do. So the negative is the loudest feeling. The worst is when it’s aimed at me. I used to feel sheer terror from that, now I feel rage. Who gets to decide? This ranking? This popularity contest that has long left high school, but still carries on? I try not to let the negative bother me, because I am intelligent and able to reason and empathize on a far deeper level than most people I know. I find people I form a friendship with, don’t want anyone seeing their true nature, or thoughts, or intentions. I keep to myself these days. I often wonder if my American Indian heritage is playing a role in not understanding, as an added struggle. If all were working for the greater good, and valued the natural order of this earth we inhabit, and not be so I, me, gimme gimme gimme (Excuse my silly words- I have 5 children) than it would be so much easier. Harmony. Peace. Love. Respect. So though I realize this is not going to happen because people who think differently, (Normal) are not going to change, and since I have tried with all my might to change myself, I can’t. And since I feel as opposed to hear others, I can’t block it out. I really wish to find someone like me to talk to. I have yet to. I read blogs and can totally relate to the posts therein, but I long for a connection. Which is ironic in itself, sense I have so many sensory issues, I need to pull over and park somewhere after an outing, just to be alone with my thoughts. My revisiting of the conversation, the over sharing, the realization of some things I never even responded to. I tell myself who cares!?!? Me, I care. A constant nagging, “Why can’t I be like everyone else?!” then immediately “I would rather not exist”
Words are literal. People don’t mean what they say. They mean what they feel too. Sorry for the over sharing, typical of me. As I said earlier I really need someone who knows what this feels like to talk to. If anyone has suggestions, please let me know. Sadly a therapist or psychologist is out of the question. Anyone who isn’t experiencing this, is not going to understand. I don’t have support, or an ear at home. I want to stay positive for my children, but it’s getting harder.
Iheedn,
I think the important thing is not to give yourself a hard time for who you are. We can always strive to improve the quality of our life but it doesn’t help when the inner voice constantly criticizes ourselves for just being
best
mark
Wow. I can relate. In getting my son screened for AS I realize now that my sister definitely has it and I scored one point below guaranteed score- which means I have an 88% probability that I have it also. Well I have it. It explains a lot. I canalso feel people too and have to actively work on trying to block (only enough to turn the intensity down slightly) other people’s true feelings and personalities now that I’m in my forties. I am also part Native American which I think is part of it. It is so draining and sometimes violating having to see and rxperience other’s emotions so I self isolate and spend plenty of time after decompressing.
PS
Sorry for the grammar errors, I normally rake everything over with a fine toothed comb, but it’s past my bedtime.
Nancy, THANK YOU so very much for your story!
My situation is different from yours. I began a relationship with a man almost 11 years ago.
This man is bright, VERY bright in fact but clueless when it comes to social interactions and human emotions.
For years, I wondered whether this man was cruel, sadistic, a narcissist or just plain crazy but after taking him into my home when he became homeless (again), I was finally able to see past his “brilliance” and realized how much he struggled with so many of the situations and little things that non Asperger people intuitively find simple.
Finally, knowing WHY my friend acts and says the things that he does, made life so much easier.
I know that his “brutal honesty” was not meant to be brutal, he just doesn’t filter information in the same way that non Aspie’s do.
It’s been an enormous relief to finally understand the root cause of his problems.
The only problem I’m having now, is getting him officially diagnosed. Since he is older (almost 61 years old) and wasn’t diagnosed in childhood, I’m finding that specialists in autism are unwilling to see him.
Getting an official diagnosis would mean so much and would help improve the quality of his life.
Does anyone have any suggestions?
Again Nancy, thank you very much for your story!
hi mary,
you may want to check out this article https://www.aspergerstestsite.com/664/how_to_get_aspergers_diagnosis/
Hello, I’m a single mother of 4 kids. But my youngest child who is 3 1/2 years old. I know has Aspergers Autism. But I’m having trouble with someone diagnosing him. The Regional Center already DENIED services for him, because it was right before they changed that law and included Aspergers as a disability, so physically to them he was fine.
But i have Kinown since he was born that there was something “wrong” or “different” with my son. Since this was my last child,.you know as a mom when something just isn’t right with your kid. He wouldn’t stop crying, only wanted me, he would Sleep very little, did not make eye contact. I kept his pediatrician informed, kept telling him to run test on him but he would just dismiss me since i couldn’t pinpoint exactly why i wanted test done when physically he seemed fine.
By the way what makes this harder for my 3 year old is that he is a GIANT. I mean he is almost the same size as my 8year old. The wear same size clothes & shoes. He is very tall 3’9 weighs 65 lbs, so he just like his dad, very tall. For that reason I’m trying to get help for him because i don’t want this to become a problem when he starts school. He already refuses to potty train and is wearing “kids size” like depends, because Size 6 diapers don’t fit anymore. I don’t want my son to be the school bully if i don’t get him diagnosed and get the right tools to help him. I’m at my wits end where it has gotten so bad ths past year, he now is hitting his siblings and defying me all together. I need help if its out there i just don’t know how anymore, since the Regional Center has denied him, i hear that i have to prove his Disability now. Help please. Thank you. I live in LOS ANGELES COUNTY so any services around that area would be great
Wow Nancy I am just like you, I am 60 and have been that way all my life. The problem I see is that doctors of degree’s are labeling autism and aspergers the same. I do not act like the movie rain man. There fore there is not enough research on this issue with the mind. Was tossed around when I was young, was labeled, she a very deep kid. I didn’t know what that meant. I started working at 15 got my social security number at 16, and stayed at every job about 8 years, unlike you I stayed where it was comfortable and felt safe. I worked my way up in every company to not have to sit with other people, a basically in charge person. There was one job though I put a ad in the paper when company’s closed down or moved, and asked for a dental receptionist training job. It was answered and I was hired and did well. One thing about me is I had to follow the book of life and I thought everybody did the same. I brought to attention that the dentist could not leave the office by law, which he was about to ,with a hygienist alone with the patience’s . Well after I said something to him he pulled me in the office gave me a harsh lecture and I walked out and took my stuff never to return. I had a problem with when to speak and when not to. What I think is what I say. I had no friends and that was up until my late 20’s. My whole life was staying away from people it brought on much anxiety. I did my jobs and went home that was my life. Then men came along and now that I sit here I know now it was just the chemistry that drew me to them and not the love you hear about, over the years I have made a revelation in my own mind I don’t really like the species too much. The are hunters of everything in the world and we are nesters. The violence they give animals and the war between themselves against country’s, women and children. I have many opportunity’s pass me by because I turned them down, knowing I would have to work with the public. I used to look at someones mouth when they spoke, now I look them in the eye. in my 50’s and up. I did not have much schooling so I am a self learner. I can relate one on one but if there are 2 gal pals together I find it very difficult. I thought it was because I was shy but I know different now. I am a recluse now, have a sort of gal pal friend who makes me laugh and we laugh together over single line humorous conversations I find that humor is the best feeling. Other than that I have given up on people in general and not working any more gives me the time to look at nature I once hugged a tree a few years back. My dogs a mastiff and a overgrown chiwawa gives me much needed comfort, and that’s all I need. I communicate very well with them and they to me. Once they are gone I will be lost, because if I get another dog and at my age it would be irresponsible if I died. I have had dogs all my life when I was on my own. I know there are many people out there not diagnosed properly just like me just like you. And I am wondering there really can’t be a medication to cure this, so with that I say live your life and I will live mine exactly how we are adapted to do. Never feeling guilty again for being a inny instead of a outy. Good luck to all like me and enjoy what makes you happy or content. Jayne
I had my 69th birthday yesterday. Reading your story made me realise how our lives are very similar. I was always told that my behaviour was was anti-social. The bit I couldn’t cope with was dumbing down in the presence of others.
I was also only diagnosed in my 60s. I’ve spent my life wondering what was “wrong” with me and why people didn’t seem to like me although I was able to hold down jobs, achieve academic success in every field I’ve studied and finally finished a university degree after I retired. I say “finally finished” because I’ve never been able to see any course of study through due to problems with other people and having to attend classes in their company. When I retired I’d already started on my courses, including Sociology, but became distracted due to family problems and my own psychological ones resulting in a breakdown in 2002. I completed a degree in Psychology in 2001 and another in History in 2008. Now I’m very active on an internet forum where I’ve met several other Aspies, and I write, prodigiously (I always have some or other writing project going on).
My diagnosis came as a result of my finally acknowledging that my middle-aged son who was diagnosed with autism as a child in the 1980s was in trouble due to the societal belief in autism being a problem, rather than merely a different way of being. As one of the other responders has said, he is the child with whom I most relate, because we have exactly the same social issues.
After doing some online tests and a score of 35, I discussed this with psychologists who agreed that my behaviour was in the range of what is expected of an adult with Aspergers. I am amazed at how this has changed me. Not only am I able to explain my inability to deal with crowds, noise, being distracted from what I’m doing, dislike of social engagements and participation in group activities, I am also able to go out more, and my lifelong tendency to slip into depression, and self-judgment, has disappeared. I am a very much happier person for this.
This story really resonates with me. I was always strangely popular as a child, but I think it was more to do with the fact that I had a long blonde ponytail and my parents dressed me well and threw parties for me and other kids from school. In truth, I was always incredibly strange.
I studied Psychology and Science at University and finished with honours, then went on to study medicine which I have a year left of before I become a doctor. Despite all this, I really don’t understand people at all, and I don’t think they understand me either.
I find comfort in numbers and patterns and listen to songs on repeat for hours, sometimes days on end.
Often people think i’m an idiot or just incredibly strange as I cant figure out how to fill out forms and I get lost all the time and turn up late to things, without meaning to.
The worst is when I hurt people who I care about with my behaviours or actions and I don’t understand what I’ve done. I find it very hard to maintain a relationship.
It would be nice if everyone who thinks the same , the meeting of the minds on Facebook, to communicate how we do best. I noticed most of us are night people by the log in’s me too. We all have a story, but once again if we are comfortable and calm in our own setting, so be it embrace the calm. I spend too many years being forced, well it felt like that, to go to party’s, social events dances yuk! And the whole time I hated it. The level of anxiety was enormous, could not wait until every thing was over and I knew I was on my way home to my comfort zone. I now decline many activities because I love to be calm and will not experience that feeling ever again because society says it’s a normal way of life. Obviously it’s not, there are many of our kind out there we just don’t know them. It’s like a hidden secret. Well no more of that I will go to bed with my dogs and kiss them good morning and tell them I love you and drift off to serenity.
I have enjoyed these stories which strike a chord with me. As a child I had little interest in friends but was made to feel that this was some sort of failure on my part. I developed social phobia and anxiety although this was put down to extreme shyness. I worked hard at school and achieved well but found all the social interaction horrendous. I found the pretending and trying to work out how you were meant to be exhausting. I never understood fashion for example is everyone trying to look the same or different? I didn’t get the social rules or why they mattered. Luckily I somehow managed to get a job after university as a surveyor with the local authority. The thing that made my life much better was when computers took over in the 1990s. I am much better at communicating in writing than verbally. One to one contact with people I know is ok but larger meetings are difficult. I have never thought of getting another job because the change would be too stressful and the thought of being rejected at interview too painful. I find people to be selfish and mean. The problem is that I can see through their facade and I can’t pretend I haven’t seen into their soul. I am married with three daughters but find the emotional support they need very demanding. I am currently finishing a masters degree in real estate development. I have not been formally diagnosed with aspergers but score almost full marks on this the baron Cohen online test. I am looking forward to retirement in a few years time when I believe I will be able to be myself without spending most of the time trying to understand people and their unwritten rules.
right on!
Hallo Cynthia Ann Bradley Kuman,
Having therapie is one of the best ways of getting to know yourself I think. I have had different kinds of help sinse I was 5. My parents never knew what I had or they never understood me but they where always making me talk to propessionals till I became the person that I am (I’m open and I can talk to everybody).
I have had psychiatrists, psychologists, social workers, neurologists, educational workers, alternatief therapie and many more… I was also many times diagnosed with other things like bipolarity, borderline disorder, depression, one of the personality disorders and in a moment I of my life I was taking 7 pills per day:(
What really helped me was when I started psychotherapy. I would always recommend this kind of therapie to people with AS because what this people do is that to go to the “roots” of the problems. They are not so much interested in what is happening in the present but they want to know why you are the person you are now, why do you behave like that and where does that behavior come from. In that process they will see many patterns in your behaviors that fit inside the syntoms of autism.
This proces could take long, but the important is that he knows that he is not alone in this world and that is ok to be different. That day he will not be afraid of been himself. Take a look at this video: http://m.wimp.com/explainsautism/
[31 male here] It seems to me that the research branch is made for us, or maybe research was first implemented by someone with AS, who knows :S
Anyway, it’s possible for us to interact with others, but a good reason is needed to keep it going.
All my life I felt incomplete, like a part of me were unhappy, and that can’t be called I’m good like this, or I’m alright, it’s just me, I needed to push forward.
Recently discovered my unconscious, that guy inside me that rarely complains, but definitely a big part of me. Unconscious is fast and accurate, but doesn’t know what to do with all the data. That’s when anybody’s conscious enters, to analyze and make new rules. During this process I think we can make any desirable input, like social skills. This is the principle of neurolinguistic programing, I think.
Thanks fot sharing Nancy, I learned a lot of your experience.
Hello Everyone,
Im Robert.
Im 63 and was diagnosed partly by the quizz on this site. I think i scored a 40 something. I like the rest of you have a very high IQ. That was discovered in school. It was so high they wanted to test me again because they thought i had cheated somehow.
The theme here seems to be that you need an official diagnosis for aspies. But you all know you have it dont you? If you need a diagnosis for your children to help get an understanding to help them through school then go for it. But really is a diagnosis so necessary? It just allows the other people to put us in a pigeon hole that they are so good at. Its their need to label everything not ours.
You all understand the side affects. I have them too.
Im lucky to have a shed where i can ‘hide’ or regroup after a social event. The shed provides me with the resource to build all the ideas that circulate in this fantastic head of mine.
I noticed too that a lot of you have University degrees. How wonderful that you are able have your degrees? Well done all of you!!
Well done all of you that have owned up to your Aspies!
I think we are very sensitive to our world. All aspects of it- physically, emotionally and spiritually and animal vegetable and mineral part of it.
For us who are ‘shy’ i learned years ago to have ideas and let someone else introduce them to the other people. How many people in history have you heard about that had the ideas for all sorts of inventions and died paupers? Would they be Aspies? oh yes!
I learned about feeling drained after being around people. I believe they are lazy and cant draw their own energy from the cosmos. Just my opinion.
I have learned to be someone else when I go out. I learned it when I was thrust into a training role in a volunteer organization I used to run. It is still a very handy tool to have and helps me cope very nicely while Im out and about.
I would like to propose an idea here. I noticed some of you dont say much socially. Do you think you dont because its not worth opening your mouth in that situation?
I have also been wondering if our children with Autism or Aspergers are ‘naughty’ because they are frustrated. That they have ideas of great significance and cant realise them. I know for me that while Im developing an idea or invention if I need something like a bearing and have to order it in the mail I sort of become paralysed while this part arrives. It causes such frustration and anxiety. Once it arrives Im into overdrive absorbing that item into my project.
While Im wondering here i wonder how children with Aspies go being home schooled?
There is a sight especially in America where you can float and idea and interested people can go to find funding for their ideas. I wonder if this would be of use to help your children, or us adults, develop their ideas?
One last comment I hope. Since I diagnosed myself I have been able to get off most of my medication. I am free for the first time in my life. A lot of the wondering etc that went on getting here is gone too. Please dont do this without consulting your doctor though.
It is very nice being with Aspergers now that I understand it. I now understand where my creativity comes from and that is a wonderful asset to me and who gives a fig about what the others think about it. Although the spin off of amazement when I introduce something new is very nice too.
So thank you all for the comments you have posted. Its nice to know we are not alone.
And thank you Mark for starting this site.
Robert
After reading a number of the posts I felt like I have come home. In my late sixties I have been “different” all my life. A few years ago my grandson was diagnosed with AS and not long after my son was also (not his father) diagnosed. It was then that the penny dropped for me and I finally realised and accepted that this is what sets me apart also.
There was grief, anger, frustration and slow acknowledgment of all that I have been through most of my life, the mockery, the put downs, the name calling leaving me with feelings of inadequacies & total lack of self worth.
For years I struggled to find a reason for my existence and where I fitted into this world. In my late thirties crunch time came, my health was so bad, I was an emotional cripple and my body was heading that way as well. It was then that my journey away from conventional beliefs and finding what best suited me began. I left old style religions behind and began my spiritual journey.
From a very early age I experienced what you might call visions -seeing the unseen, talking to unseen people, no I didn’t have any imaginary friends. I just knew these “beings” were different. I saw colours around people, especially around children, the colours were always brilliant & vivid. Around the adults there was always a heavier, darker feel. When I was around nine it all shut down when I was telling some friends about what I saw and was called a liar. Up until that timeI thought it was normal, in fact I didn’t really think about it at all, because it was normal for me. Everyone saw colours didn’t they? Apparently not and so my world was shattered and It was “welcome to the cold hard world”.
I think the hardest for me was picking up the constant contradiction from people, saying one thing and either meaning one thing or just plain lying and thinking that people were stupid enough to believe them – many did.
I withdrew from people and still do keep to my self, although I have a few close friends who have accepted me as I am. I do like to engage with people, but in small doses as mundane social niceties bore me. However over the years I have managed to learn the rules of society and try to play their games just to keep the peace. However sometimes it’s hard to bite my tongue when I see the blatantly obvious, but I have since learnt that a lot of people who think they are smart actually are having a lot more problems then I have so I have learnt much about patience & tolerance.
These days I am really happy about being in my skin, about who I am and have learnt to use my gift of AS to work with others. I have learnt that once I accepted my being “different” that I can actually use that gift in opening doors for others. Feeling into people can give an advantage because we pick up emotions before they get out of hand as long as the Aspie has learnt not to become caught in the other person’s emotions, basically learning what belongs to them and what belongs to the other person.
I am really happy to see that there are more and more people coming out of the closets, so to speak, and knowing that they are not alone. Nothing isolates or cripples people more than thinking they are alone.
It’s good to see sites like this, especially older Aspies connecting to each other
Vee, I was intrigued by your story and thank you for sharing it. It brings up something I’ve been wondering about for quite a few years but didn’t have the courage to mention in my own story. As you saw the colors around people and the non-embodied beings (auras and astral beings in “spiritual speak”), I have heard things since I was very young. I have seen things, like you, on occasion, but more frequently it was hearing. I think it’s called the voice of intuition. I think of it as God letting me know what I need to know. Sometimes it’s like just knowing something, sometimes it’s a faint voice, once it was a voice so loud and clear I turned around to see who was behind me. There was no one. So what I’ve been tentatively hypothesizing is that “Aspies” for sure and probably also those with autism are less grounded in planet earth reality than the “neuro-typical” people and more open to spiritual energy and perceptions. That would be why we’re more sensitive to people’s thoughts and feelings and energy fields and more confused by the indirect and conflicting communications. This is not to say that we’re better than the neuro-typical, but that we have our own gifts to share, if the world were interested in learning. And there are advanced spiritual people on this earth who would totally understand us and not think we’re weird at all. Maybe the reason autism is occurring so much more frequently lately is that the whole human race is taking a step forward in spiritual awareness.
I sometimes have precognitive dreams and ‘knowings’ – is it a third eye? Fascinating stuff 🙂
I’ve taken a number of tests like this and always score highly, however felt like I had different symptoms to others. For me sound is the real issue. I started playing piano when I was 7 after learning to play pop songs by ear on the electric organ a friend gave my family, and since then it’s been an interest which I’ve taken seriously, along with many others. When I was in school I had real problems making friends, stayed with the same friends throughout even though they abused that trust many times and used to spend my lunch times at school pursuing my interests; sometimes I wrote fantasy/sci fi stories( one of my interests after I started reading fantasy and sci fi), sometimes I practiced piano. Either way, I might try and do things with friends initially but I’d always end up pretty much in my own world. Either way, with music I’ve never liked what other people did, pop music generally gets on my nerves but if I’m trying to concentrate on something and there’s any continuous noise like pop music it can pretty much drive me away. I do figure skating, and have had to explain to each of my coaches that I really can’t concentrate when someone else’s music comes on. Also when I’m in a room with lots of conversations going on I can’t really focus on one very well, so when I have conversations I find someone to talk to, talk about my interests a lot without them saying much and when they lose interest I drop out of all the conversations and can’t pick up again.
Although noise is the main problem, I do also get really anxious being around people when I want to do something else-I’m now back from my first year at uni and living with my dad, so when I practice piano he’s always nearby and it drives me mad! But when I try to explain that I can’t practice when he’s standing next to me, or generally in the room we always end up arguing. I can’t help how I feel but because we’ve argued so much I worry a lot about what he’s thinking while I practice. I’m also a perfectionist so when I’ve failed at something I start to procrastinate with other things. It sort of ruined my plans for piano this last year as I spent the first term obsessively practicing a piano concerto and then when I didn’t get through concerto auditions I stopped practicing piano almost completely, decided I wasn’t going to enter one of the competitions I’d previously been very keen on and left the application and recording for the other one so late that in the end I wasn’t ready either. After failing to enter the last one I was really afraid I’d destroyed my relationship with my two piano teachers but one of them, who I’ve known for 4 years now, instead thought I really ought to speak to a therapist of some kind. Although I haven’t done this I feel like I’m understanding my problems better now I can really see I have a problem with failure. However the social anxiety and the real sensitivity to sound is still giving me problems-I don’t know whether what I’ve described is enough that I should speak to a therapist or not, because I have good periods and bad, but would like to know if anyone else finds these same things a problem-with sound specifically.
Hi Melanie,
First I want to say, talking with a therapist may be a very good thing for you, particularly if you can find one who has some experience with Autism Spectrum Disorder. They can help you to learn that you are not alone in any of your symptoms. They may also be able to talk with your father and explain how uncomfortable it makes you when he listens to you play the piano. Most everyone is uncomfortable with someone looking over their shoulder when they try to do something. And whereas your father may just be admiring your talent and enjoying the music, I know how distracting it is when you want to withdraw into your own enjoyment of the music and the act of playing, yet somebody else’s energy is intruding into your space and distracting your attention.
I also have problems with loud sounds, irritating sounds and most popular music. For some reason, I can tolerate music better when it’s played live than when it’s recorded. I prefer classical music of the classical period, very little modern classical and virtually no popular music. I don’t like anything atonal, loud, or with the heavy thumping bass of popular music. Sounds are vibrations and create waves, which can penetrate the human body and into the brain. If those waves are not harmonious, they can be felt as painful. It seems that most people don’t consciously notice the waves, but scientists have studied their effects on people and plants. Research has shown that plants grow better to classical music, and rock ‘n roll will harm or retard that growth. Hospitals are now sometimes playing carefully selected music to aid in patients’ healing, and prisons are using selected music to calm the prisoners and reduce their anger.
One thing to remember is that you may be different from the “neuro-typicals,” but you are not wrong. Just different. Just as there are different races of humans with different colors of skin, but one is not right and another wrong. They’re just different. Just keep on trying. But don’t expect perfection from yourself. This is not a perfect world, and perfection pretty much does not exist in it.
Good luck to you, and keep playing the piano.
I’m 73 now and my story is similar to your own, Nancy. I too was an astrologer, Tarot reader and palm reader, and it all just came naturally, intuitively and flowed with a life of its own. That was when I was in my late 20’s and early 30’s. I too am high IQ and exceedingly sensitive to the ‘vibes’ of others. Being in a group is as much fun as showering in a stream of razorblades! I definitely need a lot of alone time.
It’s very encouraging to read the stories of others and to feel thereby more “companioned” in the world. Yes, there are others like me, loners and intuitives and ‘strangers in a strange land’.
I’m grateful that this space is available to be able to share our experiences and challenges. Somehow doesn’t feel so challenging any more. I still easily feel lonely, yet find that simply focussing on the essence of “I am” (stripping away all the shells and personas and social conditioning) helps me to find a calm interior place, the eternal observer of the capricious personality-body-mind.
Thank you all for being who you are and for your willingness to tell your stories! And special thanks to the founder of this site!
Hello, I am an Aspie,ADHD,major depression and anxiety, i was not diagnosed until late in life.
I was always an outcast, but I always knew from a very young age what my career would be.
I realized very young that I could not have my own children, i could barely deal with myself.
i also realized that I could never work in an office setting, trapped inside, trying to do what ever office types do.
I had to be outside, I had to be, in some ways, my own boss. Not being told what to do, dealing with deadlines etc.
I enjoyed my chosen career, for the most part, my Adhd/aspergers nearly cost me my career on more than one occasion. Although I had no clue why I was treated the was I was or what I was doing wrong to warrant it.
I was very good at my career, I received some minor recognition for my work. But I was shunned by the vast majority of others. Only until later in my career did I enjoy good working relationships with other senior ppl that I worked with closely. We had all been through the worse of the worse, we all had a mutual understanding of what really existed in this world. And we did not need to express it.
Although they were working relationships, they were not anything more.
When I finally retired, I left feeling as though I wasted 30 years of my life.
I yearned for friendships, for companionship, for that typical family life. But after two short term disasterous attempts, i can no longer trust exosing my feelings to anyone.
I have nothing left holding me to my current living situation. I have decided I have wasted my life waiting on others that were not who , I thought or hoped they were.
I can not think of any othe careers or jobs where I would feel comfortable. So I am fixing up my house to sell than hitting the road, other than visiting my family, live a very long ways away, i have no set goals, I will drive whichever way the road leads.
I will take one or two of my stray cats with me. I like other aspies, love animals and nature.
I am so glad i finally found a web site with pple my age group, that have lead similar lives.
I am not sure though how i am going to handle my meds. As I have to meet with psychiatrist every three months for written refills. ☹️.
Perhaps in my travels I will finally find someone who works with adults who are both adhd and aspie.
I am 58, and just took the Aspberger’s test. I scored a 43. OMG, I am not crazy, not mental, I have yet another disability. Who knew. Just knowing what is ‘wrong’ with me gives me so much hope. Thank you all for sharing your stories, most of them sound like my life.
Hi. I’m only 16 and have been reading these aspie stories for over an hour. I was diagnosed when I was a kid but my family hid it from the world so I wouldn’t be treated differently and I thank them for that. Reading these has given me comfort in knowing you can eventually find peace. All the time I feel alone or different and like people don’t understand anything I do or say and after a while its just become frustrating to talk to people. People call me the most negative person and they don’t understand how much that hurts me.I try so so so hard to be positive and happy around other people in social situations but its so hard because every time I get a wave of something that comes over me that makes me suddenly shutdown and have the need to leave. You’ve all explained how you have a high IQ, well I don’t have a high IQ. I’m basically failing at school, struggling to hold my friendships together and relationships pretty much out of the question, I don’t know where to go after school, what career path to take and I’m not sure how much longer I can take being an outcast from this world. Reading these stories has helped me see that you can do it, you can live in this world with aspergers even though it may be the hardest thing you’ll ever have to do. I hope I can one day be at peace with my aspergers like everyone on here. I know I’m only 16 and ‘have so much life ahead of me’ but please don’t tell me I don’t know what I’m feeling, because I do, you’ve felt it too, I’m just feeling it a bit earlier is all. Thanks.