Asked in Conditions and DiseasesAutismAspergers Syndrome
What is life like for an adult with autism or Asperger's Syndrome?
September 01, 2013 4:44AM
Desolate. You are walking through streets of a desolate city that you have always lived in, and yet you don't know your way around. It's bright and dusty, and despite the sheer volume of things going on, it's quiet and surprisingly bland. It's what you might imagine a city would look like after a nuclear war.
As you walk around, you see people who are shuffling about, although you can't tell where they are going or what they are trying to accomplish. And unfortunately, everyone's faces look almost the same. There are people you have known your whole life, and yet when you look at them, their faces are so similar that sometimes it takes several seconds to tell one from the other.
One thing you do know about this place is that there are rituals, rules, and restrictions which seem (to you, at least), to be highly illogical. The unfortunate thing is that violations of this conglomeration of protocol can have highly detrimental consequences. But because the rules seem illogical, it's difficult to predict what is and is not okay. The laws are easy to follow because regardless of the logic, they are clearly defined. It's the unwritten rules which are almost scary, because violating them means losing a job, ruining a relationship, and ridicule.
They speak your language in this place, but that doesn't mean communication comes easily. Many of the words still mean the same thing, but there are just enough differences that while you know misunderstandings are very possible, it's difficult to know when the misunderstanding is actually occurring. Unfortunately, the people around you don't know that these misunderstandings are possible, so although you are on alert, the other people around you are sure that you mean what they think you mean. And when you try to clarify, it only becomes more confusing to them. Add to this that the others are physically accustomed to the debris of the nuclear mess, but it makes you very sick. The others can't understand why sometimes you have to wear a mask, so you are ridiculed for that, too. You may even lose your job for wearing it. (But you'll also lose your job for being out sick from not wearing your mask.)
There are many beautiful dimensions to the strange world, but they need to be found. They are secret places that are hard to find. Like the colorful butterfly garden hidden in a warehouse, and the sunrise which you can only see with your blinder goggles on. There is grass between your toes, but only when your eyes are closed. There are things which you see in this place which you love, so you cling to them. When you see a blooming tree with pink blossoms, you spend many hours sitting under it because it shelters you from the blistering sun, distracts you from the others passing by, and calms you in a way that the others just don't understand. But you cling to it nonetheless.
As you walk around the streets of this frightening place, you are pretty sure there are others like you. Although they, like you, are hiding. Some are hidden in nooks and crannies. Others like you congregate in pockets, but no one knows there whereabouts because once they go into their preferred pocket, they never come out again. In their pockets of people there is color and music and laughing. And it's completely up to you to find them.
If your parents are like you they could have helped you learn about this odd place. But they aren't, as they are like the rest of the others. They didn't know how to help you, or even what you needed help with in the first place. So your life is like this, and your parents try to cope with helping you down the right street if you get lost. "BUT I NEED MORE HELP THAN THAT!!" you keep shouting. But as much as they love you, all they know how to do is point you down a different street, which may or may not get you where you are going at that moment. Or maybe they were like you. If they were, they taught you about this place, showed you where the pockets of people are, and how to hide your mask. They knew what you would need to know as you grow, so they knew how to help you. Maybe your parents were like the others but knew about people like you. So they did the best they could for you, with what they had. And for you, it was good enough. What happens when your parents die? You are alone in this place.
Imagine this was your world. Now ask me what it's like to live a life as an adult with Aspergers. Although, you may not understand the answer.
Copyright © 2008 Lorin Neikirk
For anyone who is really interested in learning more about the diversity of experiences in the worldwide autistic community, I suggest visiting Neurodiversity listed in the related links below. It has a truly incredible collection of links.
-Being autistic is very much like being a Chinese farmer who is suddenly dropped into the heart of New York city on a Friday at 5:15 pm. You speak no English, have never been off the farm, have never seen TV, and are scared to death. First, you don't say a word. Your eyes are wide with apprehension. You have no idea what to do, where to go, what the Hell has happened? People begin to stare at you because your are strange. You don't seem to know what to do. You are obviously quite different and out-of-place. You seem very unusual and therefore dangerous OR you are mentally deficient somehow and amusing as you struggle to cope with this reality. Either these beings around you are afraid of you OR they think you are retarded, foolish and to be laughed at. You desperately try to communicate but no one seems to have the slightest understanding of what you want. Besides, all these folks are busy and have no time for a dangerous stranger OR a babbling person. You try to find an empty doorway or corner where you can get out of the traffic, just be alone and try to figure out whats going on. You are extremely uncomfortable even though you are in no real danger. You see a dirty alley and run there to find refuge. You crawl into some empty boxes where you can hide and think this out. But someone has noticed this strange, dangerous person, hiding in the alley, and, being "socially responsible" and helpful, calls the police to either put this dangerous person safely behind bars OR put this poor, hurting soul in an institution where he can be "helped" to rejoin the "rest of the world", "for his own good".
--If you try very hard to imagine what this situation would really feel like,
you just might be able to catch a glimmer of what it is like being an autistic adult.
The question what is it like to be an adult autistic can't really be definitively answered anyway. The autism life experience is a spectrum of outcomes some more livable than others. I finally got the great job, the house and am living the American dream but it took me 41 years of living in pure hell before I managed to make it. Even with my relatively hard-won success that was 41 years in the making; not everything is all rosy and nice.
I spent most of my life living on section 8 in flea bag hell hole apartments living among people who were the absolute worst of the scum this Earth offers. I failed at most jobs I tried not because I could not do the job but because, I was often clueless about the typical human socialization / political nonsense most jobs involve. I spent most of my life getting disability payments and being yelled at by family to get a job. Most of my life growing up family and their friends spent their time reminding me how retarded, stupid and crazy I was and this was when they were treating me good. Most of the time family and their sadistic friends were physically abusing me using my autism inspired gullibility against me. My grandparents response was often you gotta learn how to live with normal people so get back in there and figure it out.
I tell you all the stuff of my autistic childhood so you can know why I grew up to be the often misanthropic antisocial old bastard of an adult I have grown up to be. My nickname is autisticwerewolf for a reason. Autism is the closest thing to being a werewolf for real. Imagine having a monstrous reserve of purely antisocial venoms stirring in your heart 24 hours a day 7 days a week. When autistics are young they have often horrible violent tantrums where revert to a primal werewolf like form where they hurt themselves and others. If they are lucky, most autistics seem to grow out of their tantrums - WRONG. Let me tell you a dirty little autistic secret. Most autistics struggle every day to keep there autistic werewolf autism inspired tantrums and antisocial behaviors in check at least for that time we adult autistics must share with others in our day.
It is often a constant pain to keep such strong autism inspired passions held in temporary check inside. If as an adult you still have autism tantrum issues its like living with a very smart monster inside you always straining to get out. The problem with still having tantrum issues as an adult is you so called normal people do so many insanely stupid things each day to provoke your inner autistic beast to unspeakable violence and its your job to keep it safely contained. Being an adult autistic is the closet thing to being a mutant in the XMen series. Like them we are not loved, understood or accepted by so called normal human society. Adult autistics are often feared and or loathed by typical human society. It is hard for autistics to find a good job and harder still to keep it once we have it. Lots of people on the autism spectrum get and hold great jobs but that does not mean their autism inspired suffering is any less and often means their autism inspired suffering is far greater.
Autism alone has made any hope of a so called normal relationship with my family impossible. I do not like children and I do not like unpredictable activity and noise. I am very sensitive to most unexpected sensory input. I hate all social occasions even with family because, I do so terribly at such things. I am today and always have been a total embarrassment to my family. I can not tell you how many times I was told I wish you were not my brother or I wish you did not exist. I never knew true love from my siblings as a child and now as an autistic adult I neither seek or expect love from my family now. I choose not to attend family functions because, I still have not mastered behavioral patterns required for purely social occasions. Also the wounds of my autistic childhood inflicted by family are still fresh in my heart and mind. Why would I visit family submit myself to memories of a most painful unforgiving hellish autistic childhood past, I so totally want to forget as an autistic adult today.
Finally autism as an adult is hell because even today I totally lack the skills to involve myself in any purely social activities at all. I barely have enough skill to manage the social interpersonal requirements of the typical workplace. I am barely able to stay employed! I live alone. I am unmarried and likely to stay without a significant other in life. I am alone but not lonely but this autistic adult life has few perks. I spent my life speaking on autism related topics and trying to help my fellow autistics. Despite it all I am a happy autistic adult only because, I'd rather be happy, humorous and fun than the old sour bitter forever angry stick in the mud caught in a life long pity party that is the only alternative. If I did not find a way to be positive and happy as an autistic adult my inner pains and angers would fester, mutate and become a powerful force for evil that in time I could not contain or manage. I am not a good happy seemingly well adjusted autistic adult because, I want to be some Pollyanna perfect guy. I am an autistic adult struggling with horrible inner demons because, failing to do so would leave me the kind of antisocial monster prisons are filled with an serial killer books are written about. I have sought professional psychiatric help and they are ill prepared to treat me. The one anti-psychotic medicine INVEGA that did help me manage my primal tantrum rages had side effects so bad it was not worth taking. So it falls to me the autistic werewolf to survive in humanity without losing containment of my forever angry autism tantrum driven beast within. Despite all I have done to succeed in life being an adult with autism is still pure 100% hell and nothing anyone else can do can ever change that! Oddest thing is that despite everything autism has done to shape me, I would not choose to be a normal person if the chance was offered to me. All I know is my autistic life and I have grown to like myself as an autistic adult and after 48 autistic years I am at peace with my autism now and do not want or need to be cured.
Here is a way to picture it. Imagine you are in a society where everyone has an I.Q. that is 30 or 40 points less than yours. In that society, all institutions are run by these people as the norm. Now you are frustrated, because all of the decisions and processes of that society seems bizarre, consistently backwards, redundant, trivial, boring, unenlightened, predictable, and just plain wrong. You feel detached from this society. It's not really a big deal though, because you are happy to live inside your head, thinking and learning. You just wish there were companions like you. Some of us find our way into science, and when we do we find a lot of brothers and sisters who have ASD, and we get to interact over science and math like things, and explore philosophical aspects of existence over lunch. But out in the real world, we look like idiots to the rest of you.
In my case, I prefer to communicate to non compos via text. Verbal communication is virtually impossible, because my mind is working on several subjects at once, and regarding the discussion at hand, I am 3 or 4 steps ahead of the other person, and, like a chess game, I have explored and weight-analyzed a multitude of discussion paths and reactions, and so my responses are out-of-sync with the others. Meanwhile, simultaneously I am mentally responding to all of the discussions around me and on any TV or radio in hearing range. But, all of my responses are purely logical and fact-oriented, while the others are playing games with allusions, metaphors, gotcha's and the like. I am definitely not cool. I have been told I am handsome, but to no avail - forming a relationship is impossible. I have had a couple of girlfriends, but it is awkward and quickly falls apart. 92% of my life has been alone.
If any of the above sounds smug, as I am led to understand is common when ASD persons communicate, it is not meant to be.
That is some of it. There is also the physical symptoms, such as when your left and right hands change places, when everything gets really thick and feels like it is made of sponge, when physical objects become integrated with your personality, and when objects in your field of vision pop into existence. They are very pleasant sensations when they happen. I can still drive and write and do anything, including thinking coherently.
I love my autism. I wish everyone had it. We'd have settled the Moon and Mars by now, and would be spreading out to the galaxy. I hate it when the normals fret over people having autism. I am afraid they'll find a way to "cure" it.
Growing up wasn't bad as some says our IQ seems to be bit higher than average. In my case around 130. But it didn't help me go through school where I lingered around college for years never really graduating but just taking classes.
I then had a emotional breakdown and left my hometown completely without thinking of any consequences. Till this day I think it was the best cure to help understand who I am, a question I repeated in my journal ever since I can remember.
I'm not an expert, but I connect with every comment and answers made here realizing that I wasn't the only one. Which already makes me feel better and that there is hope... for me and my daughter.
So today, I agree it's not easy for us to be who we are. But maybe that is why we can enjoy this world even more than we think. It may take some time or some struggle before we realize what's really going on, but there is never a bad intention. We just think differently.
A decade ago you wondered what was the matter with you, why you couldn't graduate high school or hold a minimum-wage job or keep any kind of relationship going. Especially with such at outstandingly high IQ, which you rarely mention because it only leads to people expecting more. You used to do everything you could possibly do to keep people from getting angry, which was almost exactly like wearing a big 'kick me' sign. That led to your being emotionally and at times almost physically abused by several people, repeatedly, to which you responded by trying harder and harder, frantically, to please them so they wouldn't reject you.
But since then you've been online and figured it out. You're not really a horrible person. You're not really lazy or retarded. For a few years you tried to find a cure, a therapy, or some insight, so you could fit in.
You do your best now to keep a positive mental attitude, even though your best friend recently disappeared from you life for no apparent reason. You have no job, no volunteer work, no club, and no friends. It's just like high school, when you used to wonder how long it would take people to notice if you suddenly up and died. Fortunately, your spouse manages somehow to tolerate you. Otherwise you'd have no choice but to move back in with your parents.
Over time you adjust to the probability that you will probably always be alone, and you try to make the best of it. You try to make a decent life for your children, and try not to let on how bad it is, although the older ones have probably already figured it out. You figure you can at least set a good example as to how to carry on during adversity. You get up in the morning and do chores and try to be the best person you can be, while nobody in the outside world notices. You click on free click-to-donate sites and consider it your volunteer work, and nobody stops you because they never meet you. And you slowly lose interest in the outside world because they're not telling you anything useful anyway. Who needs to socialize with people who are borderline retarded because they're the only ones that want anything to do with you, when you could be online reading about Babylonian base-60 arithmetic or listening to Schubert, or just walking outside in the woods.
after years of being secluded and outcast by the world I met one person who taught me the meaning of happiness, the one person who showed me the light while i lived my life in the darkness, the one person i care about more than anyone in this world, my boyfriend. but he lives miles away and i only get to see him once a week. which is hard to balance with college, work and my disorder, i find it unbearable at time to live, when hes there with me he makes all the clouds drift away and puts the sunshine back in my life. sometimes i feel like im living 2 lives once in my hometown surrounded by work and the only thing getting me through it is the passion of my art, and my other life in paradise with him. but in wont let this disorder stop me from living my dream, to be a successful artist n live my life with the person i love. i hope for people reading this it has given you some inspiration to those who have autism, and i believe anything is possible and autism can be cured.
Written by Melissa Gemma Ward
You tolerate dinner with the in-laws, pretend to have fun, and hide your frustration at being excluded and treated as if you have no ambition and not much of an intellect. After all, you're used to that.
I have been pretending my whole life, trying to fake being neurotypical, but I always knew I was different. When I came home at the end of the day, I was exhausted by all the faking I had to do.
I have wonderful abilities, artistic interests, a huge amount of knowledge, likes, and dislikes. However, because I turn people off in my communication style, no one really knows me. I can't share my interests with the world in a productive way. When I worked, I was always told that my actual work ability was excellent, but then I got laid off or fired for failing at the social aspect.
The world would be so much simpler if people thought of me as a foreigner and accepted my differences as just a cultural thing. I don't feel that my natural way of being is abnormal, but because I don't act like the majority, I am seen as abnormal.
Answer 4/21/12 I gather that Autistic people are very lonely in society and long for other like them. So why don't they just seek out other autistic adults and have relationships with them? It seems like there are so many out there. Why bother relishing in your loneliness about being different and seek out others who are also different.
I am a Mum of a ten year old with classic autism and he is about to go to secondary school. I am thinking a lot of what the future holds for him. I have no idea what kind of life he will have. He many never be independent. I love hims so much and sometimes when people look at him strangely he doesn't really notice. Only when they don't answer him does he notice but he is really just puzzled. I notice and I just want to protect him. It frightens me when I read that autistic adults struggle so much. I have initiative and will help him find his place in the world. It doesn't have to be normal. I think its a case of creating an opportunity where he can be around others like him.
I am almost 40, and I always joke afterwards, with "going on 12". Most people think this is a charming description of a playful outlook on life, but have no idea I am serious.
Family members have been waiting and waiting for me to "grow up", or as they say "get with the program", not realizing I never will, and never wanted to or shouldn't have too.
At this point in my life they have all "given up" on me, and "written me off".... this hurts more than anyone can ever imagine. They never tried to "understand", or accept me. My entire life has revolved around their disapproval, which makes the loneliness that much greater.
I have some very good lifelong friends who are great, but no matter how long they have been there, I feel none of them, no matter how hard they try, or how much they want to, will ever really "know" me.... but at least they accept me and help me feel less like dying.
I now, to top it off, have a son, almost 8, with aspergers as well, so have to mow have my heart break watching people judge him on top of their judging me, and a boyfriend with aspergers as well.
I can feel so much of the world rolling their eyes at us, like "great" now there are two of them going nowhere.
Well, with me now shouldering the judgment, of my boyfriend and my son, and myself, life is harder instead of easier. I know some people think, well, now you aren't alone, but now I have three hearts to protect from breaking, and yes, we are all three still alone in our own way.
We are just alone together now.
Hello Mellisa (two "L's" One "S"... Interesting),
Aspergers- autism spectrum disorder, et al... Is and should be a huge PLUS for anyone affected by it (within their own head anyway). The less fortunate must sit out and use only 10 percent of their brain 'at rest' while those of us with Aspergers use most of our brain all of the time. Considering that science only knows how and why 10 percent of our brains work, the 10 percent use is much of a misnomer and confusing. Simply meaning, that technically, everyone uses ALL of their brain power (whether it is moving fluids, O2 or simply electrical impulses).
Just the same, most people (w/o brain damage or Aspergers) use less than 10 to 30 percent of their brain 'at any one time' for example: Resting and thinking is 10% for most people. 30% for those same people is while they are at work running a jackhammer and thinking about lunch, going after a cup of coffee and maintaining the need for leaving space for cream and sugar or deciding if they want to really waste $5 at Starbucks or while standing by the water cooler checking out the office people with a deviant mind or preparing for a party (had to cover bases people might comprehend).
Quick note: In someone with Aspergers, we will be thinking (while doing all of the above) about the tick tick in the car, the shoes our children are wearing, the extra "yet outgrown" children's clothes which are in perfectly good condition, from GAP and not Wallyworld (who in fact has destroyed America's economy by forcing the outsourcing of jobs and businesses so they can cut prices and drive the mom and pop stores out of business in order for their own monopoly to thrive whereby they pay very low wages and offer their employees easy access to government assistance to even out their pay rate [bet you didn't know they have that agreement with Social Security and Dept Economic Security did you?]) that we carry around in the trunk of our car or store someplace in our home waiting for the right child/family or place to give it to so we can feel better for not wasting it or giving it to someone who might sell it then but booze and drive drunk and kill someone... And then about that person's (who does not really exist except in our scenarios) mother who would miss them (both the child run down and the drunk who is now in prison during his mother's heart bypass surgery), AND for the little girls and grown women being abused by the Muslim religion, or the baby boys who have the skin on their penis removed when they have no decision on the matter all due to a religious belief that our parents might not have ever realized existed, or simply let the doctor circumcise the baby boy because that's normal Modus Operandi... At the same time watching out for people who might be in trouble or getting ready to cause trouble and the kill or maim spots we might need to apply pressure to if and when they make their move on the public whom we must defend and what we might be having for lunch or dinner and whether we really did grab the cinnamon or not.... then again, did we also grab the carrots and herbs as well... Oh look, a quarter!
BY COMPARISON (some noted above): Those of us with Aspergers use the 10% at rest PLUS another 30% to 80% (with more to spare) thinking of all sorts of issues, solutions, the past the future (rarely the present except when it involves safety and how well we look as we walk past the mirror), solving the problems of someone else...
Compared to the other end of the autistic spectrum, the same 10% is used, while another 20% to 60% is covering the wonders of their own world, fear (which burns up a lot of brain power in electrical impulse and the fight or flight syndrome). Plus the floating spots of activity that never really connects to anything, yet occasionally causes a sudden outburst of anger or depression.
An adult who knows this much can actually put their Asperger enhanced brain to better use because we are able to multi-task and think deeply about many problems and solutions simultaneously while recalling phone numbers and such from our childhood. This varies from person to person, but the potential is always there.
I just so happened to have been born with fluid/water on the brain- [which was drained by a doctor who essentially saved me from a life of diapers and drool...]
(BTW- I look normal/handsome and yes I do have somewhat of a vanity issue... But that's just me and women seem to love it)... -causing "Cerebral Parenchyma and increased bifrontal 'signals' IE. "added brain signal power!?" [because our brains will always make new paths for the electrical signals needed for normal brain function] with dilation of the frontal horns, where prominence of the sulci is very evident. meaning that what was originally thought of as brain scar tissue or dead brain matter aka "Encephalomalacia" is actually a dark spot of active brain which is the latest term the neurologists have given the portions of my brain which had died due to the hard birthing incident and a subsequent automobile accident in 1984 (NOTE: I was not born a mongoloid, but simply went through a very hard birth and oddly, I can recall and have recanted of the decades what happened on Valentines day 1966 when I was actually born on March 17, 1966 and have described it to my parents over the years and they agreed then realized, WAIT, you were born in March of 1966, not February 14th! So, if it's a soft brain issue prior to birth, then I must be a soft brained yet special kinda man who actually had Aspergers prior to birth and since I very well might become US President in 2016 *Watch for me* (we can only hope, because I have everything solved *esp the job and debt issues plus the only viable way to make certain that the corrupt politicians will get together and vote together to make this work-out... And my plans are spelled out in detail with ALL laws needed to prove they can indeed be put into play and within the Law, as such, they are ready to go and I do not play politics for either corrupt side).
See? There's a bit of the Aspergers and higher complex thinking peeking out of my mind where the brain is firing in additional areas that normally do not function as receptors, but only as "grey matter or storage for unused brain activity".. Now don't I feel special (not). So we add this "bifrontal encephalomacia" damage (the neurologists are now totally loopy with what they've discovered, even though I have already discussed it with many neurosurgeons over the past two decades, including my own neurosurgeon from Mesa, Arizona who could not figure out WHY I was not dead or in diapers after the massive head injury and intracranial hemorrhage (we're talking the part of the most critical portion of the brain that keeps us alive, IE. the Hypothalamus, Hippocampus, Pituitary and Pineal glands), along with the frontal and temporal lobes....
Most of us Asperger types like to spill our entire life story scenario and history so that people will know exactly what to expect from us and via our point of view and thus should not be shocked when they learn more about our intentions, limits (which are none) and we never lie (we refuse to lower ourselves to the point of needing to lie) because a lie is wholly improper and unnecessary (from my aspect anyhow and I know that many others share these traits. I was just blessed twice with what should have been fatal injuries to a systematic ability to solve issues with law and reasoning that other people cannot see either because they have preconceived ideas or extremely concentric thinking of which they have been awarded academic degrees for being taught and subjecting themselves to rules and regulations that even Einstein says are a huge hindrance to learning practical and applicable trades and the simple ability to study and "file away" industrious knowledge versus basic theory and hypothesis. Okay... Now I'm running off as usual with my normal over explaining things.
That's what it's like for me yet I have left out about twenty pages of details, names, facts, figures and research of my past actions that will prove that everything I have stated is absolutely true and concise. Edging slightly where a presumption of 'other people's minds and brains' when in fact, many of them are circumstance of projected subject matter (studies) for my explanation and percentage of brain usage... Sure, I probably did not need to explain that, but I do not want someone to claim I stated these facts, that can be taken out of context and disproven (by yet another theory made through a series of someone else's researched facts) when my subject matter was geared towards MY situation and the generalized yet unrecognized 'potential situation' of everyone with Aspergers Syndrome.
But I digress and I am stopping this while I have the option.