View Full Version : the autism spectrum, my brother, & myself


iisabelle
01-05-09, 07:03 AM
My whole life I knew that there was something wrong with my family. I was born in June of 1987, the firstborn to my parents who were 33 and 30 (my mother is older), and my brother was born 15 months later in September 1988. Later my sister was born in September 1993.

I don't remember most of my childhood, but what I do remember is:
- my brother not learning how to speak properly until he was 4 or 5
- my brother not being potty trained until he was 4
- he would throw fits constantly when he didn't get his way or things didn't go as he expected
- he was generally the centre of attention because of his "problems"
- he got special education and extra help
- he was IQ tested when he was very young because my parents thought that he might be intellectually challenged, he tested like in the 98th percentile
- he saw a psychiatrist for years because he was so difficult when he was a child that it was tearing the family apart, he stopped going when he was 17 or so, the psychiatrist as far as i know never deemed it necessary to make a diagnosis and my parents never tried to get one, but my mother remembers him mentioning "other children with my brother's problem"...
- he never had friends until he was about 17 because he was just really strange to other children, he was bullied and generally unpopular
- he acted out in school and at home, starting fights with teachers & my parents, was kicked out of of primary school
- he was violent and had outbursts pretty constantly when he was younger, now it is far less often but when it happens it is explosive
- he was a constant scholastic underachiever, when he was younger he had a lot of difficulties reading & writing (his spelling was atrocious in weird ways -"sis" instead of "this" for example) he never tried in later years because i'm pretty sure he knew he would fail again and he subconsciously would rather "not try and fail" than "try hard and then fail", he brags about how little work he did
- he had a speech impediment that wasn't quite a lisp or anything you could put your finger on, other kids used to ask me if he was british (we're canadian)
- he will delude himself into believing things that did not occur
- he can only focus on his immediate wants and needs, and gets very upset if they are not addressed right away
- he gets fixated on things and obsessed with the idea or topic & will just not leave it alone
- i believe he has undiagnosed ADHD

- my father was abusive
- he was and still is volatile, you never knew when you would say the wrong thing and set him off
- he is very violent
- he and his whole family pretty much dropped out of high school, he only went until he was 16 in France and then moved to Canada
- i believe he has undiagnosed ADHD

- I never related to other kids though apparently they didn't dislike me
- when I was 4 I always came home crying from school because i didn't understand the other children in kindergarten and thought they hated me, when my mother asked the teacher she said she didn't know what i was talking about so:
- i was sent to play therapy for a year with a psychologist
- i grew up not understanding my peers at all, not having close friends but having friends and in general being well-liked, always wishing that i could have close friends but never feeling like i could actually relate to anybody i met
- hit all developmental landmarks early, learned to read at 4, did very well in primary school (except for not paying attention, talking too much, not respecting authority figures i didn't like, not doing homework, being awful at memorizing things...) and i believe this is because of my natural intelligence as I was good at everything that did not require work at home or memorization of read or written words
- did mediocre once I hit middle & the first 2 years of high school because of concentration in certain subjects on memorization of written or read text as well as doing your homework... Constantly told to pay attention, stay seated, respect the teacher, and that I could do so much better if I just applied myself because I was "sooooo smart" and "performing under my potential"
- realized in the last 2 years of high school that (oh crap) i needed to do well if i wanted to get into university, with help from teachers who seemed to understand myself better than me (would let me leave class to walk around when I wanted to, didn't stop me fidgeting, let me hand assignments in late without penalty, etc.) I managed to get an 87 average as my average when i applied to universities, graduated with honours
- dx'ed with ADHD in last year of university after 3 years of hell
- in high school i remember writing journal entries about how i thought i was "a robot" because i couldn't understand other people's emotions, motivations, etc.
- i was told by my mother when I was 11 that she didn't feel i was a part of the family, i assume she meant because i never communicate my feelings with them or what i did in my spare time, it made me uncomfortable to share things like that with them
- i am "straight to the point", honest, point out facts when somebody strays from them while talking to me... this earned me the reputation of "cold", "rude", "intimidating", "mean", "nasty", etc. when i actually have only good intentions
- i don't understand people's reactions to some of the things i say, i will say something i see as harmless and it will upset them and i have no idea why
- i have no idea of social norms or nuances, other people's motivations totally escape me and when i express this or ask people to clarify people are disbelieving like any normal person would have understood
- people in general do not get when i am trying to make a joke unless i come out and say THIS IS A JOKE, often just to be sure when i make a joke I now by habit say "that was a joke by the way" to make sure that they don't get offended out of the blue
- i get obsessed with things or activities for a period of time and will talk a ton about them then move on to something new some time later
- i often only find out when i say socially unacceptable things AFTER i say them, when somebody tells me or sometimes when i think deeply about why people might have responded how they did
- i don't understand people who manipulate others at all and i do not tolerate people who do things that are shady or tell me things that are not true because i can't detect it easily and it's dangerous... as soon as there's a hint, i cut them out of my life
- i am naive because i always expect that people are telling me the truth and that they have good intentions like i do... i have been put in negative situations because of this before, for a lighter example there have been people who pretended to be my friend and then told everybody personal information about me
- i don't see the point in interacting socially with those who you don't truly like, i make it clear when i don't particularly enjoy somebody's company and i expect them to do the same (i see this as honest rather than rude, it'll save us both a lot of trouble), and i do not make friends easily because i hate small talk
- i would rather have no friends than friends with certain aspects of their personalities that bother me. i had no friends in this city for a time even though i met people daily through school, i just didn't meet anybody that i particularly wanted to be friends with until 2nd year
- for these reasons i am generally standoffish and intimidating to others and even people i like often think that i don't at first because i seem so brutally honest, they are often told by others "oh no if isabelle didn't like you, you would already know, she's just kind of like that"
- i am fiercely loyal and always there for my friends, and i'm truly taken aback if i am betrayed
- i tolerate zero talking behind backs about people if i know the person speaking to me would not say it to the other person's face, i will tell somebody off if they do it around me and generally be wary of that person because if they are doing it to somebody else around you they may be doing it to you in front of others
- i found a place and made friends in the Toronto punk/hardcore scene growing up, I believe because people in those groups don't care about social norms as much, and saw my honesty/bluntness/social weirdness as a positive and looked behind them to see my heart, it was the first time i made true friends in my life and i am still friends with a large number of the people i met going to shows, they love me because they always know what i am thinking and they know they can trust me ALWAYS

- my father's side of the family has a history of autism... my uncle is autistic and I believe a number of my other relatives on that side are on the spectrum, including my father. My mother always told me "whatever your brother has, I think your father has it too but not as badly".
- my brother is DEFINITELY on the autism spectrum, i just don't know where. He is far better at functioning in society now that he was when we were younger, back then he had NO friends because of his "behaviour" and our family life was always hectic because of something he was doing
- my brother took the family "problem" spotlight and that is why my adhd went undiagnosed until I got to university(!!!) even though my symptoms are quite obvious


So my point is: My mother is now FINALLY going to get my brother a diagnosis, she never did before I think because she was scared of labelling him and "sealing his future" or whatever, but now that he is 20 and cannot take care of himself I think she's waking up to the fact that maybe it might be beneficial to figure this out.

Now as for me... I have been doing research on autism and other spectrum disorders and it has become pretty clear to me that my problems bonding with people, interacting socially, understanding why i sometimes upset people, and why i don't understand social nuances/emotions are clearly linked to my family's medical history of ASD.

A diagnosis doesn't really matter to me because I already get accomodations at school for my ADHD but knowing that I'm not just socially stupid will make me feel better about myself. Over time I have come to see my social disconnection as a good thing in general because it saves me time worrying about social situations and I have fewer but better friends that I can trust. Lately I've been having a lot of problems coming off as mean and offending others, and it's been very upsetting for me and I'm very hard on myself because I feel that if I am so smart I should be able to understand why other people think the way they do and what causes them to react in different ways... But it's like a foreign language to me, no matter what I do I just can't seem to wrap my head around it, I JUST DON'T UNDERSTAND. I am a nice, honest person and hearing over and over again that I'm mean, rude, negative etc. has really worn down on my tolerance towards myself with these issues... It has gotten to the point where if I slip up just once and offend somebody with an off-hand comment it can ruin my entire day... eg. a few nights ago I stayed up crying because i had upset somebody who brought up John Travolta's child's death because I said something like "that's too bad. premature and sudden deaths happen all the time, it sucks. you just have to keep going and ignore it because if you focus on it it'll interfere with your life."

They took this as downright rude and offensive because they thought I was being insensitive about the kid's death! I meant that the death itself was really too bad for the family, and I did feel some empathy for them I guess, but I was just reminding them that it happens all the time all over the world (and it happening to a celebrity doesn't make it any different) and they shouldn't focus on the sadness of it! How is that offensive? If I had really said what I thinking it would have been "Why are you telling me this, do you really care about somebody you don't know's son dying far away? And do you think I am the sort of person who cares about this sort of thing? It sucks for the family but it's none of my business. What a useless conversation. Stop telling me about this."

So I guess I do try and gloss things over sometimes when I am aware that they will be taken as outright rude (i just really don't care about people i don't know though! why is that rude?) but I still don't understand why me being honest is rude.

So is this the sort of thing I should talk about with somebody? I don't think I have Asperger's, I dunno though... I guess I don't feel like whatever it is, it's been serious enough to interfere with my life for the most part... As I said, I mostly like the way that I am and think I am a good person, it's just upsetting other people that I don't like. What are your opinions of where I would fit and whether or not I should talk to somebody?

wsmac
01-05-09, 08:38 AM
I've spent a few years over at wrongplanet.net ... a place for folks dealing with autism/asperger's/and to a lesser extent add/hd.

It's a very nice community (in my opinion anyway), and there are lots of folks who feel they belong there but have no official diagnosis of AS.

I relate to many things people diagnosed with AS speak of, although I have not been diagnosed with AS myself (my current doctor even stated specifically that I do not have it... I asked her about it).

Anyway, I am not too concerned with any more diagnosis for my own self.
Having the useful label of ADD/HD is enough.
It's useful because even as inaccurate as the label is, it's a means of helping other's understand that my brain operates a bit differently than their own.
Things they do seemingly naturally, don't come that easily for me.
Things that I do which are beyond their own abilities or comprehension, have definition by usage of the label ADD/HD.

Yet, the label does affect how others see me or treat me.
Certain institutions are required by law to 'handle' me differently because of the label whether or not I ask for this differential treatment.

In your case, the things that dissociate you from the rest of the world are things that other people misread... not things you do with the intention of isolating yourself.
You know that, it's just hard to understand why/how these other people can't see it or accept it.

There... that's my cheap, pseudo-psych eval garnished with a bit of snake-oil.;)

So... an answer for you? Wish I had one.:o

From the people I know who have AS (specifically one family member and one co-worker), I can tell you that you have a few options...

1. Find a professional. Someone to talk to, as you mentioned, who can advise you on the current medical trend towards helping you assimilate with society.

2. Avoid people as much as possible in real life, stick with pets and/or the internet, or short-lived associations with people who you are not seriously involved with... such as the punk music scene perhaps? I know you say you have some friends in that group, but I'm not sure if some of them are the same people you are offending lately.

3. Work at learning how to blend into society. Study online forums for people with AS and learn the little tricks they use to make it through the work day or any day, without turning their lives/emotions upside down.

Learn to laugh at appropriate moments. Learn when to say what type of phrases like, "Gee, that's too bad", or "Uh huh, um hum" while nodding your head just so, so everyone thinks you're in tune with the conversation.

Basically turn your social life into an act and hope to hit your mark right on each and every time.

or

4. Try to minimize the pain you feel when others don't understand you or even, do not try to understand you.
And work a little bit towards meeting them halfway... by learning social cues and clues that are easy for you to do both emotionally and physically and consistently.

Personally, the people who I feel closest to, the people who mean a lot to me... I tell them eventually and at what feels the appropriate moment, why I am the way I am.
I basically let them know that my brain operates a bit differently from most everyone else's and that I wind up doing things or saying things that get totally misconstrued/misinterpreted.

All the other people? I just have to deal with them one-at-a-time, or not at all. There are some places, moments, events, and people that are just not worth my time and emotional involvement necessary to explain things and 'smooth things over' when I make a social blunder as it were.

They will go their own way thinking whatever they will about me, and I just need to carry on my own direction and leave that moment behind me.

It doesn't always work out so well... there have been times something comes back to me through other people, but that just becomes a new moment to deal with then. I don't have to go back and actually correct the past necessarily.

Anyway, I hope some of what I said not only makes sense, but helps a bit.
I'm 48 years old and I still make 'mistakes' in social settings.
They just don't affect me as great as they used to, or else I have the means of taking care of them in a manner I was never knowledgeable about in years past.

Since this is a site for ADD'ers, you might want to visit wrongplanet.
There are some people there who are a bit difficult to understand or get along with sometimes, but most of the folks there are really wonderful people. You'll certainly find folks with way more experience with AS than I have.

Remember, it's really an issue for the 'other' people... it's not really you... it's not really me... it's our societies not expanding their notion of what is normal and what is acceptable. They keep the definitions too narrow and exclusive. It's really unrealistic, but with power they can do whatever they want.. or so it seems.:rolleyes: