Q&A from a guy who survived being autistic

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Hello.
I'm not sure if this is the appropriate area to post, if so i apologize.
I've been curious about something for awhile, and i think my story is unique.

My details are as follows:
My name is Matthew, last name I'll withhold other than to say my initials are MBL.
I was diagnosed as autistic at Children's National Medical Center, in the 1990s.
I am 25 years old and married. No children.

When i was a kid, it was completely impossible for me to have any kind of meaningful conversation with anyone.
I refer to it as being "in the bubble".
I am still in the bubble.

However, as a lot of autistics have, or so i observed when i was grouped with a bunch of them when i was a kid, a lot of us have a focus on one particular topic, rational or not.

One kid was all about Blue Grass music, another about Meteorology. Mine was Science and Technology. Computers. The Scientific Method.
I had a period where i was grouped with others like this for approximately 3 months. Sence then i have had zero contact with others who have Autism other than now.

I applied what i knew to a cross between the scientific method and computers, and after many many years, have figured out how to talk to people and i can pass myself off as a typical person on most occasions. However in spite of all that more often than not its like I'm from another planet or something. Its literally work to have a conversation and to try and pass it off as casual.

I literally developed a "protocol" for how to speak, including hand movement, how to place my head, lips, eyes, and what topics to cover, how to cover them, etc. Much like how a modem is able to communicate between computers, i studied people and what they speak, how they speak it, and the minor little details that i learned are so important to effective communication (hand signals, etc)

For those who understand computer versioning, I'm on Social version 4.3.0.X. 4 *MAJOR* revisions, 3 moderate revisions sence the last major one, and zero minor revisions, and X(indetermine) number of minor in-house revisions.

I know there are a lot of others who were like me, and a lot of concerned parents. I do not claim to be an expert, just that i know i managed to figure it out on my own and I'm doing well.

My protocol for communicating is extremely complicated and took many years to develop, and a lot of research and experimentation. I have extremely detailed records of how i did it, as its an ongoing process. I did not have any assistance from specialists.

I'm open to almost any question, and also if i feel reasonably comfortable with someone who's asking I'd be willing to discuss it over VoIP.

I suspect I'm not the only one, so if that's the case then you may safely ignore this. If there's a possibility i may be able to help someone who was once in my position then I'd like to help.

If anyone suspects I'm a "troll" then I'd be willing to submit personal identification documents to staff members to further verify my identity.

I'd very much like to know what its like being a parent during this.

If there is sufficient interest, then i will detail my personal story and answer almost any question put to me.

And believe me, as an autistic with a photographic memory, i remember ALL of it. And i have a lot to say if someone is interested in exchanging information. Also as i have not made contact with other autistics sence then, i'm sure there are many interesting bits of information that my be shared. I'm optimistic and cautious.

And again, if this is inappropriate, i apologize.

But i have to say, i'm genuinely shocked that there's anything out here. I had no idea so for many years. There are other people. More than a dozen or two. This is a bit of a shock, so please be kind.

Wow, you really didn't know we were all out here? Well, welcome to the community! Lots of us have quite similar experiences to yours; learning scripts for conversations, learning faces and hands and body postures in terms of patterns or rhythms or whatever it took to memorize all that data.

I don't see why you're worried we'd think you're a troll; like I said, there are about a dozen people coming in here each week to say "Hi, I'm autistic too." We compare experiences, give each other tips, etc. That's why WP is here. It's one of many sites, actually, but one of the busiest.

BTW: don't put your personal information on the Internet. Not safe. Just FYI.

Welcome

Hell, no I will not ignore you. I will be glad to compare my social reflexes to your social protocol

WP is more of a Q&A on specific questions. And it is quite long and painful to go through all the data here, if someone could lay down an alpha version of a universal social protocol it would be amazing.

Greetings to you, Matthew, and welcome to WP!

Just taking things at face value here, I would guess you have some great "material" for a much-needed book. I had heard a little about AS/HFA about two years before discovering it about myself just a year ago, and that little I had heard had come from the writings of someone with experience very similar to yours ... but that does not in any way move your own story away from being unique.

I do not think of my own little world as a bubble, but I also am still there.


If you can distinguish between teling others *what* you do now and *how* you actually became able to do that, I believe many people could benefit from hearing about your "how".


That is good! An "ex" is only a "has been" anyway, and a "spurt" is but a pressured "drip"!


One-to-one, you could be helpful to many.


Today I am shocked I ever thought there was anything much anywhere else ... and again:

Welcome.

Thank you for the welcome!

Oh, the actual process of learning it was fascinating.

The first major attempt to try to learn it, I arranged for myself to end up at the local mall, found a nice spot to sit at on an upper level and just watched people from there for a few months for starters. Kinda creepy now that i look back on it but at the time it was fascinating.
I still have some of my notes from back then, i found a lot of repeating patterns like certain groups of people, say age/gender tended to wear the same styles of clothing, statistical chances of being with a group or visited certain patterns of shops.

Like, teenage females were significantly more likely to wear sandals then their male counterparts. Males were much more likely to wear sneakers.

Alot of that was useful for studying the outward appearances of people, but wasn't terribly helpful for learning how to directly communicate with people, but it was a big first step.

Welcome! As far as social interaction I can totally relate. I'm 40 now, and was only diagnosed a week ago. The little amount of TV I watched regularly was scifi, mainly Star Trek. I related most with Spock, and in "Star Trek: The Next Generation" with Data, (who was an android who was often perplexed by human emotions and social interaction) Like Data and Spock, human emotion was a foreign concept to me. I was and still am largely motivated by logic. An example of this is the fact that I don't become attached to material things, except for those that have some utility to me. My family gives me momentos and heirlooms from expired relatives, and I fail to see why I'm obligated to keep them even though when I offer these to other family members, they usually refuse them. (Unless I threaten to throw them out)

I too have spent a lot of time observing others and have become quite accomplished at passing myself off as "normal" these adaptations I was able to make before knowing I had AS. Now having the knowledge makes it easier to reprogram my thinking to overcome my remaining shortcomings.

Welcome again, I believe you'll find us to be supportive and informative... if you are interested in upgrading your mental operating system, feel free to ask!

That's incredible. I did/do the same thing. I'd love to hear how you've managed or any tips you might have.

*reading with interest*

Welcome to WrongPlanet.

Ok, well so far the responses I've gotten have been positive and the interest seems to be in "how" i got the information, so I'll detail what I've got in case anyone's interested. Let me know if anyone finds this amusing/helpful, and I'll keep posting, I've got literally tons/GBs of data I've collected over the years.

I'll detail the first major experiment, but i think context plays a major part so I'll include a little bit of that just so the context is understood as i think it does provide relevant information to this.

Around the time of the first experiments, i was about 12-13 or so.
I was "Unschooled". I can't post a link yet, so just put that into wikipedia, sufficient to say i did not go to a public or private school but was schooled at home.
Prior to and including this time, i spent most of my time in 3 places.
1. In my room. Usually with a computer, reading the contents of the Gutenberg Library (also online, google it, mostly classical texts that are out of copyright)
2. Walking in the woods. I lived in a very rural area, and I'd spend a whole evening/morning just walking in the woods or along a country road looking at corn/soy/tobacco fields enjoying the solitude.
3. On Saturdays, my father worked at a local community college in the engineering building, so Saturday mornings i found an empty engineering lab to play around in (playing with breadboards, oscilloscopes, etc)

I ate in my room, i spoke only as needed and generally kept to myself. I did not keep regular hours but in fact as it didn't seem to matter my sleeping schedule changed radically from day to day. I slept when i was tired, and i read/played with the pc/went for a walk by myself as i desired.

However the mix of all these things, especially including the sleeping schedule could mean that i could literally spend a week or two without encountering anyone at all.
I enjoyed the solitude but being alone for too long causes problems, and i was very limited without a job, friends, ability to do much of anything beyond what i normally do. Interacting with people was very very difficult/unpleasant and seemed pretty much impossible.

My motivation for trying to get out of that was a combination of things, feeling alone and also watching a lot of Sci-Fi(Doctor Who/Star Trek mostly) i wanted to be able to go to new places, try new things. A 100 miles away seemed like opportunity to "boldly explore strange and new worlds" to quote star trek

So began the idea to try to figure it all out.


Experiment One:

I tried to figure out a place to get some general information, so after looking around and looking at the local channels/radio i decided on the local mall. In retrospect it might have been a bit of a mistake as it was completely terrifying to be around so many people at once.
The mall had two levels, upper and lower. In the center of the mall was a wide open space, the top level went around it, the bottom level you could walk around and there was a fountain.
I sat down at a chair next to the railing and basically sat there for the afternoon keeping an eye on what people were doing below.
I was looking for patterns of behavior, and also as i looked somewhat different from the rest (sweat pants and sweat shirt, sneakers with Velcro) i figured i might learn something by observing what they were wearing and trying to apply that to the patterns, age, gender, race, etc. Anything that might be useful.

I did get some trouble from other slightly older kids, but it wasn't anything major and mall security was around.

I came up with quite a few conclusions and a lot of information, probably could fill up 5-15 pages of documents with that.
I did come up with the conclusion that some limited data could be obtained from how people dress and that I'd need to modify how i look for future efforts. I settled on Jeans and a t-shirt, sneakers without Velcro.

It was useful for outward appearances, but very limited data for actual interaction. I still had two major topics i figured i needed to cover which were "what to talk about" and "how to talk about it".
I was successful with both, and both are also very interesting stories as well as what i did once i had completed my first set of experiments with the two subjects.

Hi from another unschooled person, and welcome.

Are you able to just "put things out" for others to consider, or do you need actual conversation to do that? I ask because there are some people here who do tend to ask questions and interact a bit, but many only read things posted. Personally, I can communicate or "share" far more in conversation than in monologue, but you seem like you might not need that as much.

Conversation is much more useful and preferred. I'm never really sure if i understood what was said without feedback, maybe i misunderstood and am acting inappropriately. However i've found that sometimes its required to take a step and "volunteer" information or conversational topics. Doesn't always work right however, and is still a problem.

Its a bit like diving in a pool, you don't want to do it but sometimes it works out well. Otherwise you'd probably be still sitting on the bench watching others swim.

Plus in this case, its a special occasion. Last time i checked for anything like this it was one mailing letter for concerned parents. Finding a whole community is extremely fascinating. I have a million questions.

Last edited by phoenix7477 on 14 Oct 2010, 10:12 pm, edited 1 time in total.

Fantastic!
What did you think of it?
What did you do when graduation came?
When asked for a high school transcript, what did you do?

I think being unschooled was excellent for me.

Graduation: I went to a "homeschool graduation ceremony", which was meaningless to me (if life is learning, and I've been learning all along and I intend to continue learning, what does the graduation ceremony really mean?), but it was meaningful to my grandparents, so my parents thought I should do it and I didn't mind.

I actually got into university without any sort of high school transcript; if you want to know more, I can PM you.

I'm absolutely dumbfounded.
The stuff of nightmares turned into the mundane. I saw the post on the autism social rule book. I spent years on most of that!
I feel a bit like J in Men In Black on his recruiting day! Ha ha!

Kay: A person is smart. People are dumb, panicky dangerous animals and you know it. Fifteen hundred years ago everybody knew the Earth was the center of the universe. Five hundred years ago, everybody knew the Earth was flat, and fifteen minutes ago, you knew that humans were alone on this planet. Imagine what you'll know tomorrow.