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It all made sense when we found out we were autistic

bbc.co.uk

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Re: It all made sense when we found out we were autistic

#131

Post by TomK32 »

goldenkey wrote: post #112
dkarl wrote: post #48

I'm curious why people find the diagnosis to be so important. I can't at all imagine identifying with the sentiment, "Nothing is wrong with me, I’m just autistic," as one of the women in the article says. When I go to a party with my girlfriend, I want to come off well, if only for her sake, and I would like to have some interesting conversations, and maybe (very optimistically) to meet someone I can share an interes…

I agree with you. For all these disorders that don't currently have genetic backing, ie. ADHD, Aspergers' and Autism -- the best way to deal with them is to understand ones' inhibitions and pecularities as merely on the wide and vast personality spectrum that the brain can inhabit. Even if a person acts in all the symptomatic ways that the DSM lists for Aspergers', we can't really say that they have it for sure - we…

Thanks for the Autism rights movement link (here I am, an old-fashioned wikipedian of 15 years and still finding new articles).

I though Autism/Asperger has some genetic backing? At least the wikipedia article I link below has quite a list of candidate gene loci.

Here's a quote from https://en.wikipedia.org/wiki/Heritability_of_autism

> Autism concordance in siblings and fraternal twins is anywhere between 0 and 23.5%. This is more likely 2–4% for classic autism and 10–20% for a broader spectrum. Assuming a general-population prevalence of 0.1%, the risk of classic autism in siblings is 20- to 40-fold that of the general population.

Re: It all made sense when we found out we were autistic

#132

Post by goldenkey »

TomK32 wrote: post #131
goldenkey wrote: post #112

Earlier quoted context omitted.

I agree with you. For all these disorders that don't currently have genetic backing, ie. ADHD, Aspergers' and Autism -- the best way to deal with them is to understand ones' inhibitions and pecularities as merely on the wide and vast personality spectrum that the brain can inhabit. Even if a person acts in all the symptomatic ways that the DSM lists for Aspergers', we can't really say that they have it for sure - we…

Thanks for the Autism rights movement link (here I am, an old-fashioned wikipedian of 15 years and still finding new articles). I though Autism/Asperger has some genetic backing? At least the wikipedia article I link below has quite a list of candidate gene loci. Here's a quote from https://en.wikipedia.org/wiki/Heritability_of_autism > Autism concordance in siblings and fraternal twins is anywhere between 0 and 23.5…

We know many cases are genetic but don't have a definitive genetic test.

Heritibility is not hard to determine even if no specific genes are known. Mendel did this with plants even before chromosomes were discovered. So we can say simple things like the odds of offspring having autism - which isn't based on a specific gene but rather the dominance/recessiveness of the underlying genetic factors computed by census/survey/sampling data.

So yes, there is a genetic disease that causes neurological changes, autism - but it isn't correct to label all inward children as having that gene. Symptomatic diseases can have multiple disparate genetic causes - and we usually separate these into different diseases even if the symptoms are extremely similar.

Re: It all made sense when we found out we were autistic

#133

Post by oarsinsync »

ghostbrainalpha wrote: post #100
oarsinsync wrote: post #93

Earlier quoted context omitted.

This, a thousand times this. I've often struggled in social situations, I've had problems with friends, and I've had friends simply laugh at me "Oh my god, you're so strange some times" and just take the piss out of me and the things I do / I've done. Sometimes it hasn't mattered, other times it's really bugged me as I've not understood why I'm the one at fault / why I'm the weird one, and why it's not them that's we…

I'm curious about your "mask" statement. I have that same feeling, and experience with alcohol. Do you ever imagine yourself to be a robot? Or do you memorize and rehearse things to say in social situations? I often feel like I am operating a virtual machine at social gatherings. I tunnel in and give myself commands to operate like a normal human being, but I take absolutely no pleasure from the social interactions.…

I don't think I actively think about it as rehearsing lines, but I tend to pick up "catch phrases" from friends very quickly and easily which influences the behaviour people see from me.

My "mask" is more me playing a character who doesn't have these issues, who understands social cues better and is able to respond in a more socially acceptable way. It's a logical step change in my mind, but ultimately a draining one. After too long, I just need to be left alone for a few hours to recharge.

Re: It all made sense when we found out we were autistic

#134

Post by _b2lj »

TomK32 wrote: post #128
_b2lj wrote: post #124

Earlier quoted context omitted.

I'm Autistic. Diagnosed at the age of 16 with moderate-severe Asperger's in 2001. I struggled all throughout middle-school high-school and even some college to understand other people and to make friends. Middle school was the worst, because I was endlessly bullied, very depressed, extremely lonely, and constantly told that I was "weird". Before my diagnosis I remember breaking down in my school's counselors office b…

Man, you ticked off everything before you even started a bucket list (good and evil!). I'm happy they gave you a reset at Parmadale after all that shit. You write you're faking it very well in personal and professional life, and I wonder, if you'd act like you are, how would you tell people anyways before they'd just stop talking with you.

Well, I have had a policy of hiding and denying it for awhile because I fear professional reprisal or being treated differently. There are very few people in my circle of friends (and even relatives) that know I'm autistic, again because it's a deeply personal thing and because I don't want to be treated differently from others.

I've written about this on the web in the past, but then would go back later and edit or delete a post because I didn't want people to trace it back to me personally. I think I'm done with that.

I think people need to see that having moderate Autism isn't a social death sentence with the right treatment and hard work. That's why I attached my name to this post. If people want to stop talking to me because of it, then that is on them.

Re: It all made sense when we found out we were autistic

#135

Post by dkarl »

emodendroket wrote: post #83
dkarl wrote: post #48

I'm curious why people find the diagnosis to be so important. I can't at all imagine identifying with the sentiment, "Nothing is wrong with me, I’m just autistic," as one of the women in the article says. When I go to a party with my girlfriend, I want to come off well, if only for her sake, and I would like to have some interesting conversations, and maybe (very optimistically) to meet someone I can share an interes…

Because getting the diagnosis explains what's going on, gives you access to a wealth of resources to understand things that were previously mysterious, and unlocks a community of people with the same condition as you who will understand. These testimonials talk about spending years in the wilderness with no idea why you don't fit in.

I guess I've already been taking advantage of some of the resources. I've read a couple of books by Temple Grandin and read a lot of things people on the spectrum have written online about how they deal with social situations. I started doing that long before I entered therapy on the theory that maybe I'm autistic, maybe not, but either way I should be able to learn something from people who are solving the same problem I am.

Re: It all made sense when we found out we were autistic

#136

Post by zolthrowaway »

_b2lj wrote: post #124
dkarl wrote: post #48

I'm curious why people find the diagnosis to be so important. I can't at all imagine identifying with the sentiment, "Nothing is wrong with me, I’m just autistic," as one of the women in the article says. When I go to a party with my girlfriend, I want to come off well, if only for her sake, and I would like to have some interesting conversations, and maybe (very optimistically) to meet someone I can share an interes…

I'm Autistic. Diagnosed at the age of 16 with moderate-severe Asperger's in 2001. I struggled all throughout middle-school high-school and even some college to understand other people and to make friends. Middle school was the worst, because I was endlessly bullied, very depressed, extremely lonely, and constantly told that I was "weird". Before my diagnosis I remember breaking down in my school's counselors office b…

Thanks for your honesty, man. This was an incredible read.

Re: It all made sense when we found out we were autistic

#137

Post by drefanzor »

I understand they have a disorder, and yeah, it's "not that bad", for SOME. But come on. My son has autism. He is 13, and still cannot speak. He has to have 24 hour care. I understand that autism is a spectrum, but realize that what they're talking about here is much different. It's like saying someone has a paralyzed pinky versus a being a quadriplegic.

Re: It all made sense when we found out we were autistic

#138

Post by dkarl »

ForrestN wrote: post #87
dkarl wrote: post #48

I'm curious why people find the diagnosis to be so important. I can't at all imagine identifying with the sentiment, "Nothing is wrong with me, I’m just autistic," as one of the women in the article says. When I go to a party with my girlfriend, I want to come off well, if only for her sake, and I would like to have some interesting conversations, and maybe (very optimistically) to meet someone I can share an interes…

It’s regrettable that our culture has decided that neurological diversity should be understood in terms of abnormality = deficiency. It would be nice to have a more inclusive society that adapted its norms to the way people really are rather than always trying to adapt people to somewhat arbitrary norms.

I don't find that attitude to be helpful at all in my case. Everything in the official adult world encouraged me to think there was nothing wrong with me. I had the best grades, my teachers loved how good I was at following rules and completing assignments, I did well at sports, and my parents always told me I was great. I was still miserable. My parents did their best to get me to just see myself as "different," even better, but it never changed how frustrating it was that people just looked baffled or creeped out when I talked, and the other kids laughed, or they avoided me. By the time I was in second grade, I was already wondering what the hell was wrong with me, how to fix it, whether it was even possible to fix it. I was not very socially oriented, but I was painfully aware that when I tried to interact with other people, I did not do it like other people did, and I did not get the reactions that other people got. None of that came from a preconceived notion that different is bad. In fact, I grew up in a household with a counterculture ethic and a strong presumption that different is better. It didn't help. It just prevented my parents from figuring out that I had a real issue that needed addressing.

Re: It all made sense when we found out we were autistic

#139

Post by dwild »

cacrawford wrote: post #74
bluetomcat wrote: post #50

Earlier quoted context omitted.

I have never been formally diagnosed because autism is still not a thing in Eastern Europe, but the following self-assessment leads me to believe I am: 1. Constant fear of losing my belongings like keys, which leads me to check what's in my pocket every minute or two while I'm walking. 2. Overly obsessive about following a particular "ritual" for everyday stuff like washing my car or cleaning the house. Every small s…

I find it pretty common for people to tell me I'm not on the spectrum when I reveal it, as if in 5 minutes they have a better handle on me than I do. It's helped me understand just how annoying "mansplaining" can be (even when it's done by a woman.)

> I have never been formally diagnosed

That's important though... you can feel like you have something but actually have something pretty different. I understand that it must be pretty annoying for you if you are actually diagnosed but sadly, believing an internet diagnostic is too often a pretty bad decision.

Re: It all made sense when we found out we were autistic

#140

Post by Grieverheart »

wccrawford wrote: post #58
dkarl wrote: post #48

I'm curious why people find the diagnosis to be so important. I can't at all imagine identifying with the sentiment, "Nothing is wrong with me, I’m just autistic," as one of the women in the article says. When I go to a party with my girlfriend, I want to come off well, if only for her sake, and I would like to have some interesting conversations, and maybe (very optimistically) to meet someone I can share an interes…

Many people struggle with the idea that they're different than others, especially in ways that society in general considers "less". "Less socially adept", for example. With a professional saying that they have a condition that's beyond their control, and labeling it for them, it helps them say "I'm different, but it's not my fault." It shouldn't matter. Be different if you want to. Don't give in to peer pressure. But…

You should never be too hard on yourself, but putting labels can also be dangerous, as people often use it as an excuse to not work towards improving themselves.
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