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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

#101

Post by petercooper »

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…

Recently diagnosed and it has been hugely relieving to me.

I have spent most of my life unable to really understand many of the fundamentals of what I now know is "normal" social interaction and now I get to draw a line under it, realize I am what I am, and not waste time trying to "get it" any longer because now I know I'm simply not equipped to. To put a metaphor on it, to me it feels as if I were blind but grew up in a world that never told me I was, but now I know I am, I can be OK with it and cope as best I can.

So, I think everyone's experiences differ. For me, the diagnosis has been a total game-changer.

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

#102

Post by quadrangle »

isolli wrote: post #3

My wife and I believe our daughter has a (thankfully) mild form of autism. It took us a while, but when the realization came, it was a relief, as we stopped being angry at her and at ourselves: 1) hopefully we did not do anything wrong to cause this, and 2) it is not our daughter's fault that she behaves this way. We did not get a specific diagnostic, and I'm not sure it's worth seeking one. As far as I know, the dia…

> it is not our daughter's fault that she behaves this way

That would be true no matter what. There's no basis for the full concept of "free will". Everyone is a product of biology, culture, context, etc. etc.

The question is what capacity people have to behave in various ways given certain contexts. Most people can behave "normally" given the right context to do so. I suppose your daughter does not have that capacity (at least not to the normal level). So, having realistic expectations helps a lot.

We all get angry at times, but it barely ever helps anything, and that's true regardless of all these other questions about autism etc.

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

#103

Post by tzar »

quadrangle wrote: post #94
tzar wrote: post #81

Earlier quoted context omitted.

In my experience, anything that allows one to better model their feelings can have significant impact on life. That might come from a diagnosis, though I haven't experienced that myself. When someone says, "Nothing is wrong with me, I'm just autistic" they might feel as though they can stop predicting how they'll respond in a certain situation—or as a result of a certain decision—based on what others expect of them.…

Or you just get distorted view from the streetlight effect. https://en.wikipedia.org/wiki/Streetlight_effect

I'm not sure which you're thinking of as the streetlight, the diagnosis or normality? Both are saying, "What you're after is here." It's up to oneself to follow the lead that resonates the most.

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

#104

Post by sidlls »

dingaling wrote: post #95
sidlls wrote: post #71

Earlier quoted context omitted.

For us the diagnosis is a formality and a means to another end: access to resources in our child's school, protection for him from punishing him due to behavior that is a result of his condition, and formal recognition by our insurer to ease accepting claims for his therapy.

> protection for him from punishing him due to behavior that is a result of his condition That's an interesting and problematic aspect. My wife is a teacher and has started to encounter that attitude more frequently. "He gets angry because he is ${diagnosis}, you can't punish him for it". But when it disrupts the class, and encourages others to behave similarly, then some response is needed to mitigate the situation.…

My wife's sister is a teacher, too. I agree that defining that response is the problem. Especially for behavioral issues the balance you note is important. That's why extreme cases (e.g. non-verbal, violent meltdowns) are allowed to be segregated from general education classrooms when necessary.

We don't begrudge wheelchair bound students ramps to access rooms. We shouldn't deny children with "${diagnosis}" driven behavior alternatives to punishment when it's appropriate.

Edit: For what it's worth, I also think punishment is too often a first-resort by schools for all children. This is a complex issue driven in part by the horrific way we under-fund schools. Many of these problems would be much less significant if we funded schools well enough to provide the support they should (and are legally required to).

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

#105

Post by petercooper »

Viliam1234 wrote: post #98
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 like realizing that you are short ... after decades of being told that the only reason you can't reach as high as most people is because you are lazy .

Recently diagnosed and this metaphor feels right to me. Indeed, it works the other way around, because I'm "short" I can fit into places others can't (and similarly, my "condition" gives me some extra powers others don't always have).

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

#106

Post by lisper »

mercer wrote: post #55
lisper wrote: post #46

Earlier quoted context omitted.

You should consider the possibility that I have not given a complete description of my situation in a single HN comment from which one could properly diagnose me one way or the other. Maybe the aspects of my situation that would definitively decide the question one way or the other are too painful for me to air in public even after all these years, or maybe I just don't feel like baring my soul in public. Either way,…

I would be interested to hear what things helped you most in changing your situation, though! I'm still at an early stage of actually 'doing' stuff to improve things, so I'd be very curious to hear what worked for you.

Mainly just making a concerted effort, when something went wrong, to go back and analyze why it went wrong and what I should have done differently. It took a lot of trial and error (like 10-20 years worth), and even today I will sometimes freeze up in social situations because all of the things I can think of to do in some situation are being flagged as "wrong" based on some prior experience.

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

#107

Post by throwaway_ajhd4 »

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. I think the diagnosis is a double edged sword. It gives people a crutch. Like you, I'm "on the spectrum" but I don't want to know what the technical diagnosis is. It would just let me use my "condition" as an excuse for things (or at least that's how I would use it, and how most other's I've had the occasion to observe do use it).

I find this is the case with most mental health diagnoses. They can be valuable from a treatment perspective, sometimes, but most of the time it just lets someone feel sorry for themselves or excuse poor behavior. You don't get to mope around just because you're depressed, and you don't get to be a dick just because you're on the spectrum.

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

#108

Post by petercooper »

blauditore wrote: post #11

Since the causes of autism are not really understood, it's defined and diagnosed based on behavior, or symptoms, if you will. Thus, is there an actual qualitative difference between "shy, socially anxious/clumsy" and autistic, except for the extent of those properties?

Yes. I have recently been diagnosed and am not "shy" or "socially anxious" yet I tend to avoid social interactions because they don't tend to go well unless they have some sort of typical "script", or some sort of structure around them (e.g. an interview, MC-ing, a meeting). I could go into the differences in some depth but it may prove boring.

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

#109

Post by dkarl »

quadrangle wrote: post #94
tzar wrote: post #81

Earlier quoted context omitted.

In my experience, anything that allows one to better model their feelings can have significant impact on life. That might come from a diagnosis, though I haven't experienced that myself. When someone says, "Nothing is wrong with me, I'm just autistic" they might feel as though they can stop predicting how they'll respond in a certain situation—or as a result of a certain decision—based on what others expect of them.…

Or you just get distorted view from the streetlight effect. https://en.wikipedia.org/wiki/Streetlight_effect

Yeah, that could be a risk, especially in the absence of a professional diagnosis. Autism spectrum disorder comes with a ton of comorbidity, meaning that there are a lot of other problems that commonly coexist with autism, and informal online communities for Aspergers seem to downplay that aspect pretty aggressively. There are places where you can basically copy-paste a description of social anxiety disorder and they'll tell you you're an Aspie. I suspected Aspergers might be part of the picture for me, but things like that made me decide to and wait and see if my therapist brought it up.

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

#110

Post by dkarl »

kstenerud wrote: post #99
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…

The diagnosis itself isn't important per se. The important thing is becoming aware that you are autistic, thus opening up a whole community of people who have had similar struggles to yours. There are many aspects of an autistic's life that a non-autistic simply cannot comprehend, and so it's unlikely that anyone but another autistic would have figured out ways to deal with them, and how to better fit into the neurot…

I also guarantee that you have many behavioral quirks and ways of thinking that are VASTLY different from the majority, and that you're unaware of them because you haven't yet recognized the difference from a "normal" person.

Well, that's the thing. I don't really have those. According to my therapist, I wouldn't be diagnosed based on my behavior in the years she's known me. However, the stories I've told her about my childhood seemed pretty striking to her, and the outward manifestations of mild autism often diminish over time, so she suggested it might have been a significant factor in my childhood without being apparent at this point in my life. Hence the need for a specialist to diagnose me.

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