If you haven’t heard of Reddit, you should check it out. It is a community bulletin board if you will, where people can share information, learn about each other and share similar interests. A while ago, a “redditor” asked, “what is it like to personally live with autism?” Another “redditor”, named ThJ, answered.
He starts:
I don’t have it as strongly as many, and your question is akin to asking a squirrel how it is to be a squirrel. The squirrel only has his own experience to compare with. Experiences will vary from person to person. However, I’ll give it a try…
Then continues:
In general…
- Before you know you have it, you simply assume that you have an odd personality.
- After you find out that other people are in the same situation as you, you realize that you are in fact quite a normal autistic, and that many of your quirks are symptoms.
Social experience…
- You have some trouble taking hints, but only figure this out very late, or when other people tell you. It takes you very long to learn how to pick up in hints, and you never learn pick up on all of them.
- You sense that other people place more importance on how they are feeling. It affects their judgement, and things that are not based on logic and facts may come off as unreasonable or immature to you.
- You notice that people spend more time on small talk and polite phrases than you, but you don’t like it, as it don’t really convey useful information. You may have trouble initiating conversations with strangers because you lack skills in this area.
- You notice that everyone is more concerned with events among family and friends than you are. You don’t particularly enjoy Facebook. EDIT: But you do like how it lets you keep in touch with people while maintaining a safe distance.
- You feel less worried about sharing private details with people, as they don’t embarrass you to the same degree.
- You frequently forget that your words and actions could affect other people, and if you do remember, you often underestimate it. Other people assume that you are selfish, because they seemingly refuse to accept that a brain disorder can make you momentarily forget that other people have intents and preferences, and that this is different from being consciously and deliberately malicious.
- You have some issues with the tone or the volume of your voice, as you may forget that not everyone in the room wants to hear what you’re saying.
- You have more technical, geeky or obscure interests than others.
- You really love cats, and find dogs overwhelming much in the same way you find people to be overwhelming.
- You think parties and concerts are too hot, crowded and noisy.
- You have only had short romantic relationships, if you had them at all, and they only happened in your mid-to-late 20s. You’re probably unmarried or divorced after a short marriage.
- You much prefer to stay inside your house.
- You really want people to notice you and your abilities (from a safe distance), but you aren’t so good at extending that to other people.
- You like receiving clear emotional signals, since you’re not so good at picking up subtle emotions, but you are bad at sending these signals to others.
Sensory experience…
- You notice that other people are less sensitive to heat, touch, noise or light than you.
- You have trouble picking out voices in a crowded or noisy room. You sometimes find it difficult to understand voices on the phone.
- You often completely forget about time and place if you’re enjoying something, and will often experience a level of immersion akin to that of a child watching an exciting movie, even if you’re an adult, and you’re merely building a model airplane.
- You often remember that something happened, but not when it happened, or who said what. You get reactions from people when you can’t properly account for these things.
- You remember all the mathematical powers of 2 up to 262144, but you can’t maintain balance on your bank account, nor can you remember to pay your bills.
- You’re clumsier than other people.
- You’re very concerned with details. You notice small mistakes everywhere, and they bother you until they are corrected.
- You can’t sit still. You often shake your foot, bite your lips or fidget with your hands. Not doing so feels uncomfortable, because tension, anxiety or frustration builds up inside, and your body feels numb if it’s not moving.
- You occasionally feel like acting like Jim Carrey, and contort your body and face. With your friends, you usually manage to fit this into the context of being goofy.
- You tend to sit lopsidedly and lean on things, because this is more comfortable somehow. You might find yourself tilting head more often than others.
- You may have some issue with controlling your food intake. I suspect that the feeling of satiation may be offset in some autists, and people with weight issues in general. EDIT: You may have a poor appetite instead. You are particular with the mouth feel of foods.
Emotions…
- You have a full range of emotions, but you’re terrible at displaying them, so everyone, including the psychiatrists who define the symptoms, assume that you’re devoid of them.
- The effect emotions have on your decision making is smaller. You may feel a certain way about something, but your logic will often override it. You accept uncomfortable truths, and may seem jaded. People will occasionally compare you to an old man.
- You are a hard person to motivate. Most people are motivated by their emotions, but this doesn’t have much of an effect on you, so you’re stuck tickling your logical brain constantly, thus the preoccupation with obscure, nerdy interests at all costs. You have trouble keeping a job because of this motivational issue. You have perfect order in the computer programs you write, or your collection of Star Wars paraphernalia, but your apartment is a mess.
- You’re prone to getting depressed, and find it hard to pull yourself out of it, much like you find it hard to take control of your life, and stop doing entertaining but useless things all day.
Here is the link to the original post http://www.reddit.com/r/AskReddit/comments/uuw5f/are_there_any_redditors_out_there_who_have_autism/
As a father of my son of 5 years old this does give some in-sites to what he may experience later in life although knowing everyone in uniquely different yet the same.
God Bless!
Hi. Ever since I was a child, I’ve always felt “different,” like something was “wrong” with the way my brain works. As I get older, this feeling only intensifies, and it now preoccupies my mind almost constantly. Everything always seems “off”– the way I feel things, the way I process things, the way I interact with people, how difficult it is for me to read people or to pick up on subtext or other people’s emotions. At 25, I am beginning to wonder if autism is a possibility, and I have never related to anything more than I have to this post. Where do I even start? Isn’t this usually diagnosed during childhood?
Dear Simone.
Thank you for writing this interesting and important question. Having a general practice in the field of psychology along with specialization in the autism spectrum disorders, questions such as yours are not rare. In fact, on one occasion I met a 62 year old man with similar concerns.
Where to begin is such an important question. We are here to help you and make sure you find the support you need. If you would like to skype with me, please call Jacqueline 713 838 1362, ext 117 and ask her to set up a time that is convenient for us to visit.
It’s never to late and I hope I will be able to speak with you.
Dr. Sheely
This made me feel almost uncomfortable. During many of the points I felt like someone was almost in my head. Its a odd but good feeling to know others feel the same as me. Very well written
I’m the same with most of these points even though my parents tried really hard not to let me. I was diagnosed with high functioning autism but I was wondering if maybe it can get stronger with age, because I’ve noticed that several symptoms of autism have been getting more noticeable as I get older and I seem to be developing others, like I don’t like load noises now such as fire works.
I’m a 28 year old and I’ve just started exploring the possibility of being on the spectrum. I identify with many of these signs- particularly that of needing to be absorbed with a logical interest and being able to get lost in an activity. I’m wondering if anyone will identify with the feeling of your emotions being far away and only breaking through infrequently. Also- are people on the spectrum more comfortable than others around individuals with special needs, such as Down’s syndrome?
From my personal experience (I’m 28 and only starting to look at autism now) I can tell you that it is very important to address your anxiety about yourself. You don’t have to spend your life feeling different and wrong.
Yes, I fit many of the points listed above but not all. We are all different. I love nature and can easily get lost in the space-time in a proton in a grain of sand in a concrete wall. I can get lost for an hour in a leaf on a tree, and fractals. Temple grand in, by contrast, said she could not understand the beauty that others saw in a tree, or in nature. We, and all people, are quite varied. Some people believe we don’t love. I think some of us love more deeply and more faithfully than most people. (We’re just like a TARDIS or a cat: slow to let people in). I’ve seen more of the universe than I suppose normal people do – and most of the scientists and writers with whom I’ve worked seem to be somewhere on the spectrum. Stephen Jay Gould, paleontology’s poet, once said, “I suppose a bit of the Aspergers may be essential for pushing the envelope of scientific advance.” Another who suspected he was Aspergers simply said, “Think different.” I wouldn’t have it any other way. I would not give up any part of the universe – the sheer beauty in every direction – to be normal.
I found what you wrote about love to be very interesting. The way I understand it, love will be generated by a deep understanding of how this person fits into my life, what he/she means to me. In other words- it will start from the intellect, and because of that it can perhaps be stronger and more faithful.
All of this is me. Trying to find a doctor for diagnosis as an adult seems impossible here in Toronto.
I was diagnosed with ASD just a few months after the change from specific, i.e. Asperger’s etc. – at the age of 68. Knew something was off but I had a very high IQ and always considered as smartest in the room. I ended up as a programmer/analyst/systems engineer and retired at 65. I also was in the Air Force right after high school where I was in the intelligence service as a linguist – at one time a spoke (in some cases badly others rather fluently) five languages. When I got out I graduated from college with a fine arts degree in music (classical guitar). I changed majors more times than seemingly possible – I was even one semester away from graduating in psychology (I had to fake some experiments in my experimental psych class due to the fact that I could not possibly face asking somebody questions – even family. I became fascinated with classical guitar and managed to get a rep as the school’s best in just a few years because I was able to practice 8 to 10 hours a day – it felt normal to me then but now I’m pretty sure the autism helped. I also studied sitar with a gentleman who was a visiting professor of Indian music at Wesleyan in Connecticut and now for the past 10 years or so I play lute. I got married at 50 to a lady I meet at work – no idea of how we ended up getting married but a co-worked sorta set us up. Still married but there was a rough point (which I had no idea existed at the time). I was searching the net one night and found a ‘do you have autism’ test, took it and my score made it really, really obvious that’s why I had been doing things the way I was my whole life. I told my wife about it and she insisted I get it officially checked. I got a diagnosis of ASD at which point she was so relieved that she could understand why I was doing things the way I did. It’s been 4 – 5 years with the diagnosis and it makes everything much more understandable for both of us. I’m not sure why I’m writing this but just to let people know that even if it takes 68 years to find out you have an ASD it sure does help knowing.
Mr. Smith,
Thank you for sharing your story.
I’m not sure where to start… I’ve heard most insurance companies won’t pay for an adult diagnosis and it can cost anywhere from $1500-$3000. Our family just can’t financially do that. I am a 31 year old mother of 3. I have looked into adult autism a lot lately and I’m becoming more convinced as I keep looking. Maybe some symptoms are anxiety, but don’t autists have anxiety also, or at least pieces of it in certain situations? Part of me is in denial though because I can’t understand how I could get through so much without any realization of autism. I had a really messed up childhood, and some of my symptoms I can remember as far back as when I was 3 and 4. How can I know the difference between being autistic and having problems with anxiety because of my childhood household? I’m sure it’s probably both.
Hi Nicole,
If I am understanding you correctly, you have a child on the spectrum and are wondering if you also share some of the characteristics of an ASD. Most of us have characteristics similar to those experienced by persons with ASD. The difference is that ASD characteristics are more pronounced and more intense. It can be sorted out, though, and if you will forward an email to me I will try to either put you in touch with someone who might prove helpful or speak with you on Skype. Dr. Sheely sheely@rdiconnect.com
This sound more like ADHD to me
There are shared characteristics. I have also found that the difference may lie in the intensity. thnx for your note, Sarah
Dr. Sheely
Founder
RDI
Wow u see me clearly
We are all working together to better understand each other and to make the world a more user friendly place ofr all of us.
All the best to you and thank you for your post
I would simply like to have a diagnosis so that my family I not hostile toward me, thinking I am a selfish heathen. I have had a series of broken relationships but have a sort of paranoia-driven ambition to do good things…what makes it hard is I can’t maintain friendships and feel so anxious and awkward trying to fit in at work. Not sure how to do volunteer work when they give me too much freedom to figure out what to contribute—I just want someone to give me the directions so I can follow them. I have had the same tune in my head for years at a time. I know I am autistic and it seems like my life is over if I don’t find a way to convince my family not to treat me like the bad guy who has never been a true Christian.
I would be happy to refer you to somebody who might be helpful. where do you live
Until reading your post, I was by far the oldest at diagnosis that I had heard of. After a frenetic life fighting through the blizzard of autism, the loss of my 40-year wife and best friend brought all tumbling down. (Don’t ever believe that autists don’t love at least as deeply as neurotypicals.). After about 18 months of recovery, my son asked during a debate whether I knew how offensive I was being. This caused me—for maybe the tenth time in life—to seriously address the reason that I never have a clue about such things.
I’m guessing every young autistic child knows they are different. After the service, I went to college specifically to take courses that would enlighten me about my condition. I rejected autism as a possibility because in the 70’s autists were either mentally impaired or idiot-savants, and I have a very high IQ. Ultimately I had to go with the theory that my nightmarish upbringing is to blame.
This time around the science is much closer to autistic reality and I was immediately struck with certainty of my real condition. I see no reason to waste time or resources on an official diagnosis; I hear it’s very hard to find a doctor to diagnose at 68 years old, and I have no doubt at any rate. And it’s not as if they’re going to cure me or change my life at this point.
I agree with Joe that it’s still very worth knowing. Only about 4 months after learning I’m autistic, I am making decisions appropriate to someone who knows their limitations. Just as important to me, I am learning that, since I will never ever be anything like socially acceptable, I can give up that lifelong quest after normalcy.
I’m learning that I have to take very special care about the situations I allow myself to get in to. This, by definition, means I have to act in abnormal ways and also that those around me either come to an understanding or be excluded from my world, much the same as autists are routinely excluded in modern society. This is a refreshing change for me, after living an entire lifetime of trying my damnedest and still being rejected… the load off my heart is tremendous. Before, I always undertook any challenge to prove my abilities, I got into situations where an autistic ought not to be. Now I avoid such situations and life is much more peaceful.
To be clear, payback is not at all the motive for narrowing my social world; after seven decades of trying to appear to be normal when that’s impossible, I’ve decided to grant myself freedom from a world that absolutely expects me to conform. I hope to maintain friends and family, but they’ll either meet me part way or be shed of me.
I sincerely wish for other late-life diagnoses, that they maintain their love for all while still refusing to be beaten up or down by neurotypicals who see no reason to give oxygen to people who don’t measure up to neurotypical standards. Life is hard and autism is very much harder. Hold fast, seek peace.
I just responded to another post above, but this is so important. I hope you’ve found peace, Amy. I spent 20 years as a teacher and elder in the body of Christ. My classes were well attended over many years. But Christians in general are no more open to autistic differences than the world out of which the Lord called them. You and I know that our faith is not defined by other people, Christian or not. Rather, the Lord has implanted his spirit within you.
It is the Lord’s design that a Christian’s faith is sorely tried in this world, and by that we grow. Unfortunately, sometimes our faith is tried by those within the church family. Our response is still the same: speak the truth to one another in love; hold fast to your faith.
Im 37 amd ive been feelimg like this for aslong as i can remember im now only just getting help for a diagnosis about myself as knly just admitted there is something not quite rite
I absolutely agree with you! I am a 46y/o female who only NOW has realized, like a ton of bricks dropping on my head, that I am unequivocally autistic. And that knowledge explains EVERYTHING in how my life has gone up to now, without even realizing I was doing typical autistic behaviors that would get me in trouble with NTs. I learned to mask like a pro, but even then, over time my autistic tendencies would show up and make it hard for me to maintain long term/healthy relationships because I would just get annoyed at everyone else around me all the time. Lol
I am in a 5yr relationship and am getting married in June to a man I now highly suspect is autistic as well. Lol He agrees he has some definite autistic traits, like social awkwardness, but those things endeared him to me from the start, because deep down inside, I can relate. Haha
I completely relate to your sentiments and thank you kindly for sharing them. Embrace ALL of you, not just parts of you. Our “normal” is different from NTs “normal”, but they are just different normals. I am optimistic for the future of autistics, and others in the ND spectrum community. There is a continually growing number of people now getting diagnosed properly, or at least realizing they are autistic by educating themselves about it. Forty years ago we didn’t even hear the word “autistic”, while I was going through my meltdowns/social assimilation difficulties. At least now we understand WHY, and that makes ALL the difference at our age. It’s a time for healing.
Thank you for your comments. And, Congratulations on your upcoming wedding! 🙂