[h0l0cube]

> Whatever diagnoses I may or may not have, they are not me – and I don't want my children growing up identifying with their diagnoses either

It's not a matter of identity, but explanatory power. To reiterate, the self-acknowledgement/'diagnosis' as autistic (not ASD) is 'useful from a self-compassion and tolerance standpoint'. So instead of, why do I find X difficult when everyone else finds it easy (or even laughs/condescends/points it out), I can say, I'm autistic, that's not easy for me.

I agree that autism is a fuzzy socially-defined phenomenon. The distinction, once again, is only as valuable as how much it comes into conflict with society. So, by example, if a child is being made fun of for not understanding the tacit social rules of the playground, or a teenager of the art of seduction, or an adult of polite conversation, this self-awareness could be useful as a way of understanding one's own difficulties, and also as a way of surmounting or managing them. It can also be useful for others to be more aware or tolerant. I also agree, it's not on the person themselves, they are not broken in some way.

[Firadeoclus]

> It's not a matter of identity, but explanatory power. To reiterate, the self-acknowledgement/'diagnosis' as autistic (not ASD) is 'useful from a self-compassion and tolerance standpoint'. So instead of, why do I find X difficult when everyone else finds it easy (or even laughs/condescends/points it out), I can say, I'm autistic, that's not easy for me.

It bothers me a bit that, if you turn it around, the lack of an explanation would be an impediment to self-compassion and tolerance. "I find X difficult" ought to be enough, whether that coincides with any other traits (autistic or otherwise) or not.

[h0l0cube]

You make a good point. The "I find X difficult" is a 'disability' trait, and disabilities are only really relevant where they conflict with the expectations of wider society. In all cases it's really the social exclusion that's the problem. If someone has a trait that either can't be changed, or takes exceptional effort to mask, it shouldn't be on them to do the impossible. If however it's just habit, or actual lack of effort to change, that's a completely different thing.

[skissane]

> It's not a matter of identity, but explanatory power. To reiterate, the self-acknowledgement/'diagnosis' as autistic (not ASD) is 'useful from a self-compassion and tolerance standpoint'. So instead of, why do I find X difficult when everyone else finds it easy (or even laughs/condescends/points it out), I can say, I'm autistic, that's not easy for me.

I have no problem saying I have autistic traits, as do both my children. I find some things easier than the average person and other things harder, and no doubt my autistic traits have something to do with both. But I'd much rather say "I have autistic traits" rather than "I am autistic". Traits have far greater reality – and scientific validity – than diagnoses.

Autistic traits are also very common in people with something other than autism – in fact, most psychiatric disorders, a significant subset of those diagnosed with them display heightened (even if subclinical) autistic traits. Identifying with a diagnosis rather than traits encourages ignorance of that reality.

[h0l0cube]

I think the word autism has become such a loaded term that it has become undesirable. The removal of the distinction between 'autistic person with significant access needs' and 'autistic person with low access needs' (formerly aspies) has been problematic, in that it took a term historically (and incorrectly) associated with Rain Man and conflated with someone who's socially awkward, might struggle with emotional regulation, be hypersensitive, may have difficulty with motor skills, have nervous ticks and habits, shutdown in overwhelming situations, burnout from normal tasks, etc. but otherwise can function in a day job, pay the bills, do the laundry, cook, eat, and bathe themselves, if only with more struggle.

I've heard this plaint a lot lately, that there needs to be different language to talk about this common neurological phenomenon. I heard that there was a push to write the DSM VI in terms of its biological mechanisms. It sounds like an almost insuperable challenge, and might explain why an updated revision of DSM V was released after a decade, instead of a new manual.

[skissane]

> I heard that there was a push to write the DSM VI in terms of its biological mechanisms

There are two basic problems with that proposal (1) we still largely don't know what those biological mechanisms actually are, especially not with the degree of confidence necessary for them to be used for individual diagnosis (2) there is massive social/cultural/political/institutional/professional/financial investment in some of the current labels (especially autism/ASD), even though they correspond poorly to what is really going on in the brain, and any attempt to replace them with a more accurate system of labelling or diagnosis produces major pushback from people who are threatened by loss of those investments

I think to gain a better understanding of "what's really going on", good places to start are https://www.nature.com/articles/s41398-019-0631-2 and https://link.springer.com/article/10.1007/s40489-016-0085-x and also https://stresstherapysolutions.com/uploads/wp-uploads/RA.pdf

One proposal (in the second paper I linked) is to merge ASD, ADHD, intellectual disability, borderline personality disorder, oppositional defiance disorder, language impairments, learning disabilities, tic disorders, atypical epilepsy, and reactive attachment disorder into a single disorder (an undifferentiated "neurodevelopmental disorder" or what Christopher Gillberg calls "ESSENCE"). ASD is already a kitchen sink, but still small enough that people can pretend it isn't; let's make a kitchen sink so big that nobody can deny it is one. Including BPD and reactive attachment disorder also helps clarify the complexity of causation, that many children's problems are produced by complex interactions between biological factors (genetics, in utero exposures, etc) and social environmental factors (trauma, abuse, neglect, maltreatment, parental mental illness, etc)–whereas labels like "ASD" wrongly put all the emphasis on the former to the exclusion of the latter

[h0l0cube]

Regarding the two basic problems: I imagine the people involved are aware of the enormity of the challenge, and don't seem to be concerned about Big Psychiatry (nor does new hard-science based diagnosis and treatment threaten profits of that industry). But really I don't know. It was just an off-hand comment from Robert Sapolsky's Human Behavioral Biology lecture series on YouTube, they might not be attempting this at all.

> whereas labels like "ASD" wrongly put all the emphasis on the former to the exclusion of the latter

Early intervention autism treatment has limited success. If you've got dyspraxia, inattention/hyperattention, fidget, avoid eye contact, have meltdowns, speech/processing delay, etc. you're fighting something at the neurological level that can at best be attenuated over time by plasticity, or simply just managed, like epilepsy.

[skissane]

> you're fighting something at the neurological level that can at best be attenuated over time by plasticity, or simply just managed, like epilepsy.

Nowadays, the label "ASD" is applied both to children whose issues become apparent in early childhood, and also to children who don't develop serious issues until later in childhood, even adolescence. A two year old with severe issues, it is much more likely to be predominantly biological in origin. But a ten year old with milder issues, it becomes much harder to say to what extent it is biological compared to what extent it is due to how they've been raised.

Consider families where one of the parents (sometimes even both) has a personality disorder such as BPD or NPD – that can produce difficulties with the parent displaying consistent emotional responsiveness to the child, which can harm the child's emotional development, resulting in attachment disorders, emotional and behavioural disturbances, etc. Ideally, the parent is aware of this and can get professional help in preventing this from happening; however, many such people are in complete denial about their condition, and will refuse to seek help. There is a lot of symptomatic overlap between children with attachment disorders and ASD. Commonly, there is lots of funding and resources available for the ASD label, little or none for any others. If the parents aren't open about what is really going on, few professionals want to go digging. So they'll diagnose the child with ASD. If anyones suggests parental issues may be a contributor, many will trot out the tired talking point of "Bruno Bettelheim's discredited refrigerator mother theory".

Added to this, it isn't like "autistic traits due to bad parenting" and "autistic traits due to biological factors" are mutually exclusive categories. It is entirely possible the child already has a baseline genetic disposition to autistic traits, which are then being amplified by the poor family environment. There is a lot of overlap between personality disorders (especially BPD) and ASD, and some even question the validity of the ASD-BPD boundary – even if they are indeed distinct conditions, they likely have some shared genetic loading.

[h0l0cube]

> Commonly, there is lots of funding and resources available for the ASD label, little or none for any others. If the parents aren't open about what is really going on, few professionals want to go digging. So they'll diagnose the child with ASD.

I agree that there's probably a lot of mis-diagnosis, but that's hard to quantify as an outsider to the profession of psychology. I think this is separate to autism being a nurture over nature thing.

> Added to this, it isn't like "autistic traits due to bad parenting" and "autistic traits due to biological factors" are mutually exclusive categories. It is entirely possible the child already has a baseline genetic disposition to autistic traits, which are then being amplified by the poor family environment.

I agree that genetic, pre-natal, and very early childhood environments have a huge impact on behaviour. My opinion relies heavily on an assumption that there's genetic and pre-natal neurological/gene expression differences for autistic people, and that is probably the source of our disagreement (i.e., nurture vs nature).

[Fnoord]

Broken or not depends on context and who you ask. In the end we are all HR and as many of us must function in society. Add to that that there's an abundance of jobs due to babyboomers quitting the workforce (though less in USA according to Peter Zeihan) and there is a large benefit having people in general function in society.

My daughter is 5 y.o. and has a best friend on school. Our daughter is undiagnosed for now, we both are. I get the feeling the mother of her best friend isn't happy with them being best friends. Why? Fear of being excluded, I suspect.

Right now I'm unemployed since December and the lack of employed role model for my kids is thus far more harmful than lack of income (though latter will become relevant again within time).

[h0l0cube]

When I was 18, I attended an elective subject at college about "Professional communication". It was the first time I learnt that body language is even a thing. There's definitely courses to help with communication skills, particularly in a professional context, though I imagine the quality of said courses would vary dramatically. Not to mention there's a whole cottage industry of unqualified 'life coaches', 'style coaches', and so on, though their value is probably even more variable. I'm not sure if they could help employability, but such services are available to everyone.

[Fnoord]

I got help. Not when I was 18 when I needed it (could not finish my education), or at the very least nothing of substance but with a severe lack of empathy. As an adult, as part of my autism diagnosis was therapy understanding autism. That was fascinating, it helped me a lot. I also followed an adult education aimed at people with autism. It didn't fully align with my interests so I had to find something related to that within the job market. I ended up with a job within that field, with 3 one year contracts. Because I already was deemed 100% unemployed the org got benefits for contracting me. Unfortunately, my neighbors complained about our kids noise and even accused me of being a child predator/rapist. The former (regarding the noise) being truth though something we do try to minimize and the latter BS but also my worst nightmare before becoming a parent. I ended up with a burnout (and on the brink of a psychosis) and slowly got back to working full-time. I reported myself 75% better, but unfortunately my contract didn't get renewed (that sword of Damocles was apparent back when I got the burnout, so it was of little surprise).

The day I got unemployed I had to report to the government employment agency, and the above was basically not believed. I feel misunderstood. I already mentioned the story truthful though omitting some personal details, so I'd like to add the art of cooking a dinner as well as programming are some of the most awesome things one can perform, in my opinion. But because of the endless possibilities and the many small steps I can only perform very simple, basic, archaic instruction sets.

[h0l0cube]

You neighbors sound like trash. That sounds like a tough situation, and it's a small mercy that you have at least the financial support of the government. Autistic burnout is real, and I've cumulatively spent years out of work because of it—once again I was fortunate to have the financial buffer. I eventually got to a better place, but not before being in the workforce again. If it helps to talk, I've put my Slowly ID in my bio for a few days