Autistic ERA |OT| Slippin' on by on ASD

[mentallyinept]

Quite possible, whether because of the stage at which this is occurring - you're not going to 'fix' much with a toddler, autistic or otherwise - or because of shifts in general practises over time. After all, a lot of adult autistic people are having to relay their experiences - their traumas - from their childhoods, which are sometimes decades ago. This doesn't mean that the forms of ABA with which they are most familiar have necessarily gone away, or aren't a concern anymore, but it is possible that changes in mindset nevertheless applied under the same umbrella - because you know, language is funny like that sometimes - have eased their way in. After all, the outright definition of autism has changed within the US within the last decade - under the DSM-V, hotly debated by those affected by such changes - and a number within this thread can speak to the inconsistencies in the treatments they've received; some doctors telling them there was no way they were autistic while others thought it was quite obvious, because each was operating on a differing clinical definition.

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Yeah, I don't want to minimize anyone's trauma or experiences, and it's really disheartening to read that so many people have had to deal with such terrible treatment.

Also, sadly, when dealing with mental health issues, non-neurotypical conditions, and other non-visible disabilities you have a large contingent of people who have a really hard time of sympathizing and either view it as a "choice" or some kind of ploy or charade.

I have had several family members tell me that they or another close friend or family member probably would have been diagnosed with autism under the current definitions. I feel like the ground has shifted underneath the goverment, health, and service industries and they are struggling to adjust. Combined with a general rise in awareness of a whole lot of toxic attitudes and you have a large contiginent of "old guard" people in several positions of power that need to move on (or in some more extreme cases, be prosecuted).

That unfortunately is one of the big threads that runs through the treatment of autism, both within the US, the UK as where I am, and the world globally - there is a simple lack of standards, both in the sense of quality but also in the sense of consistent understanding. Not helped that, if you're having to spend hundreds or thousands - in some cases, hundreds of thousands - of dollars or the equivalent thereof upon treatment, whether for yourself or for your loved ones, you don't want to feel like you've bought into something ineffectual, or worse, harmful. And that makes actually discussing the merits of any given methods difficult because they're tangled up in webs of sunk cost fallacies, successes vs failures, and just... differences in definition that are assumed but often not clarified. You're already seeing how frustrating it can be to navigate on someone else's behalf, so I hope you can sympathise with how difficult it can be navigate for one's self.

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Thankfully, the monetary cost of this hasn't really had a large impact on our family. We have really good union-negotiated healthcare coverage. That lets us be 100% focused on life skills and communicative based positive outcomes, wherever form they come in.

I'm behind any form of effective communication that my son can properly leverage. Text, PECS, Speech, whatever it is.

And like, I say all that from a relatively fortunate position. I am open to the general broad idea of some degree of conditioning because I can recognise treatments vaguely along those lines that have functionally proven useful to me - I have this little hand gesture for example which basically pavlovs me into calming down, and I had to use that when dealing with my phobia of crisps - as delivered by clearly competent staff who truly wished the best for me. That is, unfortunately, not what a lot of people in this thread, and around the world, have received.

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Yeah, I'm not into policing my sons physical "quirks", hand flapping, running his laps on whatever he's doing, etc. I'm not really worried about it. The way I see it, that is his way of expressing excitement in whatever form it is. When he gains a more effective way of communication, he may use those means to convey excitement instead, but it's not much different than me jumping up and pumping my fist watching a sporting event.

That said, I would pay a large sum of money for a coping mechanism that my son could use when taking a bath\shower. Whew...

 

[JonnyDBrit]

snip

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Honestly, I do appreciate that you came along to this thread, even if it wasn't exactly what you were expecting it to be. It shows a willingness to engage beyond merely expressions of sympathy or demonstrations of allyship that so often define a lot of other threads. And you have clearly put a lot of time and effort into research and understanding - and actual examples thereof, not the 'I found this thing that says vaccines autism' strain - and have an empathy for how some things function, and how harmless they are, as much as others may be concern. Lot of neurotypical people don't reflect on where their own habits come from, so it's definitely good you've already considered how you express yourself in unusual fashions when you think there's a context to justify it, and realised how that applies.

On a lighter note, I kinda want to field some questions in advance (though I realise it's weeks away) of the community showcase; you know, lay out some of our preferences and interests and such. How would people feel about that?

 

[JonnyDBrit]

...realising I should probably give an example. So, as an example:
What, if any, character in fiction was your first analogue (in the sense of being analogous) for your condition? A character in which, even if not exactly autistic, was close enough - in attributes, struggles, whatever - that you felt a connection to them because of it?

 

[CatDoggo]

I've kinda been wanting to post something here but, eh, I don't know. I said before that I avoid many autistic spaces for being too negative and it's for that reason that I don't really want to keep dragging this thread down with my own negativity. I assume you guys aren't big on my novel length rants either. LOL

 

[Kthulhu]

I've kinda been wanting to post something here but, eh, I don't know. I said before that I avoid many autistic spaces for being too negative and it's for that reason that I don't really want to keep dragging this thread down with my own negativity. I assume you guys aren't big on my novel length rants either. LOL

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I say go ahead.

It's healthy to vent.

 

[CatDoggo]

I say go ahead.

It's healthy to vent.

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I'll spare the textbook post this time and just sum it up in one go. LOL

Life. Ugh.

Okay, I'll be more in depth.

I'm starting to wonder if its the social anxiety that has left me with a crippling fear of criticism, no matter how justified that criticism might be, or if the cause is something else. In fact, I have a hard time parsing cruel criticism from valid criticism, but all of it ends up making me want to curl up into a ball and die. Pretty much any criticism, or scolding, or hell, any anger thrown my way tends to fuck me up really bad. It becomes justification in my own head for every bad thing I've ever thought about myself and I use it as proof that I really am just a terrible person that everyone only puts up with. I wish I could figure out what is real and what isn't, cause even past my own issues, it often does really feels like I inevitably rub everyone the wrong way. It's probably why I try so hard to be agreeable and not make anyone angry because I just don't deal with other people's anger well.

I'd give anything for people to just be more genuine with each other. Open, understanding, and empathetic. But that's just not how people work and life is unbearable and depressing most of the time because of it.

 

[Kthulhu]

I'll spare the textbook post this time and just sum it up in one go. LOL

Life. Ugh.

Okay, I'll be more in depth.

I'm starting to wonder if its the social anxiety that has left me with a crippling fear of criticism, no matter how justified that criticism might be, or if the cause is something else. In fact, I have a hard time parsing cruel criticism from valid criticism, but all of it ends up making me want to curl up into a ball and die. Pretty much any criticism, or scolding, or hell, any anger thrown my way tends to fuck me up really bad. It becomes justification in my own head for every bad thing I've ever thought about myself and I use it as proof that I really am just a terrible person that everyone only puts up with. I wish I could figure out what is real and what isn't, cause even past my own issues, it often does really feels like I inevitably rub everyone the wrong way. It's probably why I try so hard to be agreeable and not make anyone angry because I just don't deal with other people's anger well.

I'd give anything for people to just be more genuine with each other. Open, understanding, and empathetic. But that's just not how people work and life is unbearable and depressing most of the time because of it.

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I kinda get what you mean. My girlfriend has anxiety and she gets the same way.

It doesn't help that sometimes I am quick to anger which can ruin her day. Been trying to have more self control though.

 

[jb1234]

I'll spare the textbook post this time and just sum it up in one go. LOL

Life. Ugh.

Okay, I'll be more in depth.

I'm starting to wonder if its the social anxiety that has left me with a crippling fear of criticism, no matter how justified that criticism might be, or if the cause is something else. In fact, I have a hard time parsing cruel criticism from valid criticism, but all of it ends up making me want to curl up into a ball and die. Pretty much any criticism, or scolding, or hell, any anger thrown my way tends to fuck me up really bad. It becomes justification in my own head for every bad thing I've ever thought about myself and I use it as proof that I really am just a terrible person that everyone only puts up with. I wish I could figure out what is real and what isn't, cause even past my own issues, it often does really feels like I inevitably rub everyone the wrong way. It's probably why I try so hard to be agreeable and not make anyone angry because I just don't deal with other people's anger well.

I'd give anything for people to just be more genuine with each other. Open, understanding, and empathetic. But that's just not how people work and life is unbearable and depressing most of the time because of it.

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I'm the exact same way. It hurts like hell.

 

[Brazil]

Hey, everyone!

This thread is this week's Community Spotlight :)

 

[OniLinkPlus]

Aaaaa spotlight too bright! Turn it down! (Sensory processing joke, all's good)

But seriously this thread has been dead lately. iirc Neurotypicals are more than free to ask questions, esp since we've been spotlighted, but... keep in mind autism mean we communicate differently. I tried to explain why something is bad and apparently the person I was talking to thought I was attacking them personally and I still feel bad about that :(

 

[JonnyDBrit]

Aaaaa spotlight too bright! Turn it down! (Sensory processing joke, all's good)

But seriously this thread has been dead lately. iirc Neurotypicals are more than free to ask questions, esp since we've been spotlighted, but... keep in mind autism mean we communicate differently. I tried to explain why something is bad and apparently the person I was talking to thought I was attacking them personally and I still feel bad about that :(

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There's always that weird issue around like, to what extent a person liking/doing a thing = them 'bad' as a result. Especially because apparently there's no such thing as grades of severity anymore where like, yeah something is potentially wrong but doing it doesn't make you a horrific person and such

But yeah, uh, sorry. Not really the most active community by the nature of things.

 

[Like the hat?]

Where does one go for an adult diagnosis? I have a son who has an ASD diagnosis so I've done a lot of reading and learning about what ASD is. I feel like a lot of it fits myself as well. Any of those self screeners I have done have shown a strong likelihood. However, finding someone who works with adult diagnoses has been difficult.

 

[OniLinkPlus]

Where does one go for an adult diagnosis? I have a son who has an ASD diagnosis so I've done a lot of reading and learning about what ASD is. I feel like a lot of it fits myself as well. Any of those self screeners I have done have shown a strong likelihood. However, finding someone who works with adult diagnoses has been difficult.

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It's excruciatingly difficult to get a diagnosis as an adult, as many professionals believe it must be diagnosed in early childhood, but it is possible. We'd have to recommend you to a specific clinic for diagnosis, which requires knowing your location unfortunately. I'd recommend looking for psychologists or psychiatrists in your area who are trained in adult Autism.

 

[JonnyDBrit]

Yeah, there's an annoying bias in the already fractured and inconsistent infrastructure towards children - even here in the UK it is decidedly the 'Child and Adolescent Mental Health Services'.

 

[FeistyBoots]

So an update from me - yesterday I severed ties with the therapist who refused to accept my ASD1 diagnosis and was looking for any excuse to dismiss the work of the licensed psychologist with a PhD in the field and 20 years' experience working with autistic people. Not about to pay for the privilege of being gaslit.

 

[Stop It]

I'll spare the textbook post this time and just sum it up in one go. LOL

Life. Ugh.

Okay, I'll be more in depth.

I'm starting to wonder if its the social anxiety that has left me with a crippling fear of criticism, no matter how justified that criticism might be, or if the cause is something else. In fact, I have a hard time parsing cruel criticism from valid criticism, but all of it ends up making me want to curl up into a ball and die. Pretty much any criticism, or scolding, or hell, any anger thrown my way tends to fuck me up really bad. It becomes justification in my own head for every bad thing I've ever thought about myself and I use it as proof that I really am just a terrible person that everyone only puts up with. I wish I could figure out what is real and what isn't, cause even past my own issues, it often does really feels like I inevitably rub everyone the wrong way. It's probably why I try so hard to be agreeable and not make anyone angry because I just don't deal with other people's anger well.

I'd give anything for people to just be more genuine with each other. Open, understanding, and empathetic. But that's just not how people work and life is unbearable and depressing most of the time because of it.

Click to shrink...

I'm honestly really shit at the opposite.

I don't really do "cruel" criticism or at least, 90% of the time I'm not trying to be. But I often come across as such because I struggle to identify the difference between the two. So I'm often accidentally hurtful when I'm just trying to be honest.

That hurts me a lot because I'm not intending that at all.

And yes, I often get scared when people are generally angry because I feel that it's against me.

Where does one go for an adult diagnosis? I have a son who has an ASD diagnosis so I've done a lot of reading and learning about what ASD is. I feel like a lot of it fits myself as well. Any of those self screeners I have done have shown a strong likelihood. However, finding someone who works with adult diagnoses has been difficult.

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Where are you? I've just been referred to get one after talking to my GP about a unrelated mental health issue so it is possible.

Yeah, there's an annoying bias in the already fractured and inconsistent infrastructure towards children - even here in the UK it is decidedly the 'Child and Adolescent Mental Health Services'.

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Weirdly the local trust here has a specific adult only Autism diagnosis and support system. I'm going to guess it's a postcode lottery.

...realising I should probably give an example. So, as an example:
What, if any, character in fiction was your first analogue (in the sense of being analogous) for your condition? A character in which, even if not exactly autistic, was close enough - in attributes, struggles, whatever - that you felt a connection to them because of it?

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Definitely.

Watching Brooklyn Nine-Nine had me thinking if they intended Amy to be an example of what you mention. Her high intelligence but poor social awareness, the constant need for her mentor and bosses approval and lack of understanding of personal criticism not only match that, but I very much understood and empathised with the character on a personal level in many respects.

 

[JonnyDBrit]

Weirdly the local trust here has a specific adult only Autism diagnosis and support system. I'm going to guess it's a postcode lottery.


Definitely.

Watching Brooklyn Nine-Nine had me thinking if they intended Amy to be an example of what you mention. Her high intelligence but poor social awareness, the constant need for her mentor and bosses approval and lack of understanding of personal criticism not only match that, but I very much understood and empathised with the character on a personal level in many respects.

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On the first point - very much so. Some parts of the country are legitimately better than others in terms of general support and that's just infuriating to think on.

As to the second, while I don't think Amy was meant to be especially coded that way, Brooklyn Nine Nine does fall into that form of comedy by way of making everyone in some fashion neurotic that can wind up applicable. So it makes sense that someone - in this case, yourself - could see the character that way. I honestly ended up projecting onto the cast in a whole bunch of ways.

For me, my personal case is Hercules. As in, the Disney take. Very much analogue over actual, but just... that first act where Herc is just struggling to make sense of himself, makes a mess by trying to help but then overcorrecting, and is hopelessly naive, really struck me as a kid. I Can Go The Distance became something of a personal anthem; can still sing it largely by heart.

 

[HylianSeven]

Where does one go for an adult diagnosis? I have a son who has an ASD diagnosis so I've done a lot of reading and learning about what ASD is. I feel like a lot of it fits myself as well. Any of those self screeners I have done have shown a strong likelihood. However, finding someone who works with adult diagnoses has been difficult.

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I'm in the same boat, although when I researched it, the place I found would have had me pay $3000, and insurance doesn't even cover it. I can hold a job so I just gave up.

 

[JonnyDBrit]

I'm in the same boat, although when I researched it, the place I found would have had me pay $3000, and insurance doesn't even cover it. I can hold a job so I just gave up.

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...t-three thousand dollars...

 

[fireflame]

Question:are you aware of situation in France where autistic children are taken away from parents because they are wrongly reported as victims of abuse ?i saw documentaries about it, it felt heartbreaking to see those children separated from their good parents because of administration's stupidity.

 

[HylianSeven]

...t-three thousand dollars...

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Yeah...I'm extremely fortunate to have a good job that I can hold, so I decided it wasn't worth that money to me.

 

[JonnyDBrit]

Question:are you aware of situation in France where autistic children are taken away from parents because they are wrongly reported as victims of abuse ?i saw documentaries about it, it felt heartbreaking to see those children separated from their good parents because of administration's stupidity.

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I... was not, but after just looking it up, yikes.

https://www.theguardian.com/world/2...-the-state-scandal-of-french-autism-treatment

So they separated the family on the grounds that oh, the mother was seeking a diagnosis under false pretenses... but then a diagnosis actually comes back and they don't release the kids. What the actual hell

 

[fireflame]

I... was not, but after just looking it up, yikes.

https://www.theguardian.com/world/2...-the-state-scandal-of-french-autism-treatment

So they separated the family on the grounds that oh, the mother was seeking a diagnosis under false pretenses... but then a diagnosis actually comes back and they don't release the kids. What the actual hell

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Once the parents are suspected, they are always considered as guilty by default because the administration does not like to admit mistakes. I didn't understand everything about it, but one issue is many specialists have a "psychoanalytic approach" of the problem where autism is seen as a problem coming from the mother. Rachel's children were apparently given a crocodile plush, apparently, if you put the finger in the mouth of the crocodile you are victim abuse, and you are only fine if you try to shut his mouth.

 

[Kthulhu]

Once the parents are suspected, they are always considered as guilty by default because the administration does not like to admit mistakes. I didn't understand everything about it, but one issue is many specialists have a "psychoanalytic approach" of the problem where autism is seen as a problem coming from the mother. Rachel's children were apparently given a crocodile plush, apparently, if you put the finger in the mouth of the crocodile you are victim abuse, and you are only fine if you try to shut his mouth.

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That's like in the dark ages when they'd make you hot hot iron to see if you're guilty.

 

[Stop It]

I'm in the same boat, although when I researched it, the place I found would have had me pay $3000, and insurance doesn't even cover it. I can hold a job so I just gave up.

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...t-three thousand dollars...

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I know our NHS can be a bit shit, but this is legitimately disgusting.

"Want a diagnosis of something that can help understand yourself, unlock help in the community and gain understanding of the world through your specific prism? Cash please".

The idea that healthcare goes to those who can pay is abhorrent.

Yeah...I'm extremely fortunate to have a good job that I can hold, so I decided it wasn't worth that money to me.

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That's not the point. You shouldn't have to pay to access care. You shouldn't have to choose between your job and your care. I'm sorry you aren't able to access a service you need.

I... was not, but after just looking it up, yikes.

https://www.theguardian.com/world/2...-the-state-scandal-of-french-autism-treatment

So they separated the family on the grounds that oh, the mother was seeking a diagnosis under false pretenses... but then a diagnosis actually comes back and they don't release the kids. What the actual hell

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The rest of the article is so, so much worse.

Parents are told: 'Forget your child, grieve for your child and accept the fact that they will be put in an institution'.

In addition, the United Nations warned in 2016 that a technique called "packing" – in which an autistic child is wrapped in cold, wet sheets – amounted to "ill-treatment" but had not been legally banned and was reportedly "still practised" on some children with autism. The then health minister issued a memo advising that the practice should stop.

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This is legitimate abuse of child and parent. Jesus France, get it sorted.

 

[CatDoggo]

Oof, I'm really regretting my rants even more now that this thread is way more visible than normal.

Gotta love that I can't even post anything without giving myself a ton of social anxiety. Era's admittedly one of the only places I post on semi-regularly. I tend to be a lurker who barely speaks up in most places, and even on here a lot of the time as well. While I tend to communicate a lot better through the internet, it doesn't change that it's a place that brings out the worst in people and no amount of better communication can make up for the cruelty that others will display when they don't have to fear real world consequences for their actions. It's such a shitty joke that the one place where I can talk to people is also the place where people are way more likely to be hostile and go out of their way to harass. So, it kinda ends up with me being almost as silent on here as I tend to be in real life.

Finding out that multiple websites are dedicated to/or have topics that exist just to mock Era and its users hasn't helped much either and it makes me way more cautious about posting on here a lot of the time. How much I care about what I post on the net varies from day to day, but I don't think there's ever been a single thing I've posted on here or in other places that I didn't spend plenty of time afterwords wondering if it was a bad idea to put my thoughts into text.

In the end, I end up regretting most of my posts later. LOL

My one saving grace is that I'm enough of a complete nobody with so little presence on the internet that nobody is going to dedicate their time to stalking or harassing me, but the fact that it's something you potentially have to worry about at all is complete shit.

 

[Prax]

...t-three thousand dollars...

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Hey guys, if it helps, my friend got informally diagnosed in her late 20s by this doctor:

https://www.kennethrobersonphd.com/

Maybe you'd be open to using his services. "Formal" diagnoses cost a lot because I think it requires you be under observation with multiple healthcare professionals, while informal ones can be done via a few one on one interviews. he WILL also do Skype/facetime interviews if you can't meet with him (as he did with my friend--she is on opposite end of the country) :D.

More info: https://www.kennethrobersonphd.com/services/aspergers-syndrome-diagnosis-in-adults/

I think it cost her $225 per session/interview. Still pricey, but less than $1k at least.

 

[LinkStrikesBack]

I'm in the same boat, although when I researched it, the place I found would have had me pay $3000, and insurance doesn't even cover it. I can hold a job so I just gave up.

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Jesus. I had a long wait time, but it didn't cost me a penny in the UK. America really needs to get it's healthcare related shit together. (Not that I expect this to be news to anyone)

 

[collige]

Damn, this page is making me glad I got diagnosed as a kid. Those costs are bonkers.

 

[JonnyDBrit]

I was wondering if I was maybe overthinking things earlier this year when I wondered if there should be a fundamental right to a diagnosis - or more fancifully, certainty of the mental self - but this just affirms that no, it would probably be a good idea

 

[OniLinkPlus]

Honestly, this is the reason I personally dislike the whole "you gotta be professionally diagnosed to be autistic!" Diagnosis is expensive and humans who do the diagnosis are notoriously fallable with all sorts of biases, especially against women, people of color, and adults. If you relate to the autistic experience and resources for autistic people genuinely help you, you're autistic, and nobody should judge or take that away. Self-dx is super valid

 

[CatDoggo]

Honestly, this is the reason I personally dislike the whole "you gotta be professionally diagnosed to be autistic!" Diagnosis is expensive and humans who do the diagnosis are notoriously fallable with all sorts of biases, especially against women, people of color, and adults. If you relate to the autistic experience and resources for autistic people genuinely help you, you're autistic, and nobody should judge or take that away. Self-dx is super valid

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This is pretty much where I'm at. While I would prefer that anyone who believes they might be autistic try to get a diagnosis, if only so they can have the peace of mind, its often not a realistic option thanks to healthcare being shit in so many places. As long as its this way, nobody should be getting bend out of shape over self diagnoses.

 

[Prax]

Yeah, my female cousin and I (also female) are very likely on the spectrum but are undiagnosed and we're juuuust functional enough to "pass" for just being anxious people lol. Really though, I don't think most people would even describe me as anxious because I have a kind of deadpan reaction to most things.

Very luckily for my cousin, friend, and I, we're all pretty high IQ as well, allowing us to hack together navigatioal systems for socializing and getting supports. Sometimes I think about how trapped/screwed I'd be if I only had average intelligence or below average curiosity.. especially since we're all poc (east asian) from poverty backgrounds. My friend likely would have just been dead if she weren't so smart because of how hard her life has been.

 

[JonnyDBrit]

Honestly, this is the reason I personally dislike the whole "you gotta be professionally diagnosed to be autistic!" Diagnosis is expensive and humans who do the diagnosis are notoriously fallable with all sorts of biases, especially against women, people of color, and adults. If you relate to the autistic experience and resources for autistic people genuinely help you, you're autistic, and nobody should judge or take that away. Self-dx is super valid

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At the very least, 'possibly/probably autistic but cannot get the diagnosis due to various barriers' should be itself a valid position within the community. The bigger issue mind you is getting recognition of that from people outside said community, given a lot of people just do not realise the potential obstacles therein. Because for fuck's sake, three thousand dollars... hell, even the 225 per session! That kind of financial barrier is a catch-22 for people who'd only be able to hold down a job if they had already received support, but would need the money to get support.

 

[Hercule]

Honestly, this is the reason I personally dislike the whole "you gotta be professionally diagnosed to be autistic!" Diagnosis is expensive and humans who do the diagnosis are notoriously fallable with all sorts of biases, especially against women, people of color, and adults. If you relate to the autistic experience and resources for autistic people genuinely help you, you're autistic, and nobody should judge or take that away. Self-dx is super valid

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I have mixed feelings about this. While it's insane getting a diagnosis in the USA seems so expensive I also fear that not having to be diagnosed will lead to a lot of people suddenly being autistic.

Having autism is really hard and a lot of people don't even accept its a real condition.

If suddenly a lot of people claim they have autism because they have trouble connecting with other people or just like to be alone it will devalue autism.

 

[JonnyDBrit]

I have mixed feelings about this. While it's insane getting a diagnosis in the USA seems so expensive I also fear that not having to be diagnosed will lead to a lot of people suddenly being autistic.

Having autism is really hard and a lot of people don't even accept its a real condition.

If suddenly a lot of people claim they have autism because they have trouble connecting with other people or just like to be alone it will devalue autism.

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There's also the matter of the fact that people may genuinely have symptoms... just not of autism, but due to various overlaps and what they find first in researching, think it's autism. But well, ideal vs reality of the situation and all that, as CatDoggo laid out above. Until people are able to reliably access good support that will generally and correctly identify one way or the other, there's gotta be some consideration given to those for whom it might be applicable but just cannot verify it.

 

[OniLinkPlus]

I have mixed feelings about this. While it's insane getting a diagnosis in the USA seems so expensive I also fear that not having to be diagnosed will lead to a lot of people suddenly being autistic.

Having autism is really hard and a lot of people don't even accept its a real condition.

If suddenly a lot of people claim they have autism because they have trouble connecting with other people or just like to be alone it will devalue autism.

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Strong disagree. Autism is only hard because neurotypicals make it hard. It needs to be demedicalized and normalized, and people need to embrace the idea of neurodivergence.

Talking about more people being identified as autistic "devaluing" Autism just sounds gross to me.

Edit to clarify: it's gross in the same way saying "more people with college degrees devalues college" is gross. The knowledge and skills gained at college are valuable on their own, independently of economic value. Similarly, knowledge and acceptance (both self acceptance and societal acceptance) of one's self is valuable on its own.

 

[Hercule]

Strong disagree. Autism is only hard because neurotypicals make it hard. It needs to be demedicalized and normalized, and people need to embrace the idea of neurodivergence.

Talking about more people being identified as autistic "devaluing" Autism just sounds gross to me.

Edit to clarify: it's gross in the same way saying "more people with college degrees devalues college" is gross. The knowledge and skills gained at college are valuable on their own, independently of economic value. Similarly, knowledge and acceptance (both self acceptance and societal acceptance) of one's self is valuable on its own.

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I'm sorry, I didn't meant it in a bad way. I just fear that when a diagnosis isn't needed anymore people are going to take autism even less serious.

But I do realize that not living in America has put me in advantage. I was 20 when I got my official diagnosis and it didn't cost me anything (money wise).

I'm not sure if non autistic people will ever understand how it is to be autistic. The spectrum is so big what makes it even more hard. Because of movies like Rainman people always think I'm a extremely good in math. In reality I'm really bad at that

 

[OniLinkPlus]

I'm sorry, I didn't meant it in a bad way. I just fear that when a diagnosis isn't needed anymore people are going to take autism even less serious.

But I do realize that not living in America has put me in advantage. I was 20 when I got my official diagnosis and it didn't cost me anything (money wise).

I'm not sure if non autistic people will ever understand how it is to be autistic. The spectrum is so big that it's really difficult what makes it even more hard. Because of movies like Rainman people always think I'm a extremely good in math. In reality I'm really bad at math

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Ok that's fair. Apologies for jumping to conclusions. People not taking us seriously is a huge problem, especially right now when we're either treated as a joke or a tragedy. Especially in the US, dunno how it is elsewhere, but I haven't heard much good (looking at France and some of my Canadian friends experiences in particular).

I wish people would realize that most of our "superpowers" are just special interests and if they cared they could become really smart in specific topics too

 

[JonnyDBrit]

Strong disagree. Autism is only hard because neurotypicals make it hard. It needs to be demedicalized and normalized, and people need to embrace the idea of neurodivergence.

Talking about more people being identified as autistic "devaluing" Autism just sounds gross to me.

Edit to clarify: it's gross in the same way saying "more people with college degrees devalues college" is gross. The knowledge and skills gained at college are valuable on their own, independently of economic value. Similarly, knowledge and acceptance (both self acceptance and societal acceptance) of one's self is valuable on its own.

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I mean... obtaining a college degree is about pursuit of one's aspirations and/or the expansion of their pool of knowledge, where diagnosis would be about assessment of one's behaviours and/or issues therein. Desiring that such assessments be accurate, and not overly dilute people's understanding of the concept by making it too applicable, is hardly 'gross'; if someone actually has bipolar disorder I would want them to get support for bipolar disorder, not for them to think they're autistic because they heard about the... emotional issues some of us can have, and weren't able to consult someone to better clarify the details.

But again, that's ultimately a consequence of how lacking and inconsistent the infrastructure is. I mean, a thread like this exists in part because I hope people stumbling across it will read things here and see some things that ring familiar to them, where they might not have had any reference for them previously. A guy made a thread recently about how he was going through the process of getting his diagnosis, and after linking him to the National Autistic Society's website, he found a lot of what he read there to be very familiar. And if the person he consults comes back and says 'Nope, not autistic after all', I'm not gonna dismiss it out of hand either way because... things aren't in a place where I can entirely trust that result.

 

[Hercule]

Do you live at home with your parents? Not a big deal if you do, you're only 22. If you do, do you think you would be able to live out from under your parents? My kids can live with me as long as they want but again, just want to believe he could handle it when and if he wanted to. And again, not trying to make generalizations, just really curious.

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Used to live with my mother and brother. My mother passed away and my brother left to Japan. It's definitely difficult.

Simple things like making appointments is hard and you have to be really careful not to neglect eating properly. Didn't went to the dentist for years so my teeth where beyond saving. Since Wednesday they removed all of them and replaced them with a denture/false teeths.

I was declared unfit to work this year so that's a plus and luckily I have family who help me when help is needed. Also having a brother in Japan can be quite useful

 

[fireflame]

I have seen people criticize Gretha Thunberg stating that since she was Asperger, she was being used as a tool and manipulated by "eco-fascists". This shows there is still a stigma about autism and intelligence...

I also wanted to ask something. Do you find understandable that people with other mental issues like OCDs as well as important issues with social cues might "feel" close to autism spectrum? I don't look for any social welfare money since I am already benefitting from it, but since 2012, I see a psychiatrist and he told me that I kind of lacked the software other children had to interact with other(which I compensate with other skills and all. He once talked me about disharmony of childhood development, but I never found a satisfying definition about what it implies.

I have mixed feelings about this. While it's insane getting a diagnosis in the USA seems so expensive I also fear that not having to be diagnosed will lead to a lot of people suddenly being autistic.

Having autism is really hard and a lot of people don't even accept its a real condition.

If suddenly a lot of people claim they have autism because they have trouble connecting with other people or just like to be alone it will devalue autism.

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One issue is how the word is also used in so many wrong contexts... a player who lacks teamwork, someone who has specific hobbies, someone who is stubborn... it is used in many wrong contexts and it ends up making people confused I believe.

 

[JonnyDBrit]

I have seen people criticize Gretha Thunberg stating that since she was Asperger, she was being used as a tool and manipulated by "eco-fascists". This shows there is still a stigma about autism and intelligence...

I also wanted to ask something. Do you find understandable that people with other mental issues like OCDs as well as important issues with social cues might "feel" close to autism spectrum? I don't look for any social welfare money since I am already benefitting from it, but since 2012, I see a psychiatrist and he told me that I kind of lacked the software other children had to interact with other(which I compensate with other skills and all. He once talked me about disharmony of childhood development, but I never found a satisfying definition about what it implies.

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Oh entirely understandable, both as separate conditions but also as potential manifestations of the spectrum at work. The nature of autism means it can have a lot of overlap with other behavioural and sensory issues; with regards to something like OCD, common compulsions in terms of pattern recognition and 'accuracy' of information (though the 'information' in question may be the presentation of an image) do mean many autistic people have habits they feel - knowingly or otherwise - they just have to do.

 

[Android Sophia]

*peeks in*

I should probably post here more often, so um, hello everyone!

Autistic here. Was diagnosed when I was 12 or 13; I can't remember exactly how old I was. Probably would have been diagnosed sooner, but it was the 90s, and the signs were kind of masked by gender dysphoria. Also have noticeable social phobia, in addition to generalized anxiety. I've been improving a lot lately, however, thanks to the help of a medication for generalized anxiety + therapy.

Currently at a school that assists studies with disabilities, working in the IT program towards my A+. I think a good chunk of my class are on the spectrum. Hopefully, I'll be done sooner rather than later.

 

[empressdonna]

Well, after a bit of lurking I finally have the courage to speak here so hi o/

I got diagnosed with Aspergers at 18-19, all thanks to my transitional college course lecturer suggesting that maybe I could be on the spectrum.

However I will say even after being diagnosed, it took me until my late twenties to admit that it caused me as many issues as my visual impairment.

But now, I'm part of a NAS run social group and have been for almost 3 years. It has been really good for me overall!

 

[JonnyDBrit]

Well, after a bit of lurking I finally have the courage to speak here so hi o/

I got diagnosed with Aspergers at 18-19, all thanks to my transitional college course lecturer suggesting that maybe I could be on the spectrum.

However I will say even after being diagnosed, it took me until my late twenties to admit that it caused me as many issues as my visual impairment.

But now, I'm part of a NAS run social group and have been for almost 3 years. It has been really good for me overall!

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Nice to hear from you, and to hear such progress. A pick-me-up is nice after some of the stuff that's been discussed on this page

 

[Deleted member 48434]

I guess I should probably properly introduce myself here finally,
I was diagnosed back when I was about 10, but going back even in time than that, it was obvious to everyone but me that I was a bit "Different".
So my mum took me to my pediatrician and I got diagnosed with... ADHD.
Just about every single teacher I had each year had something to say to my mother about me from this point on-wards though, often the same thing "I think your son may have Aspergers syndrome."
Upon reaching grade 5, low and behold, I got diagnosed with Aspergers Syndrome (Now High Functioning Autism), and my ADHD got rendered a misdiagnosis (I still have the attention span of a gnat though).

Until my final years of HS, I was always horribly reclusive, and had little desire to socialize with the vast majority of students.
I entered into the Special Education unit shortly after entering HS, which felt pretty great to a young puffin, as it meant I could keep far away from anyone else.
Alas, as I grew older and wiser, and the very few maladjusted friends I had in SE either graduated or got expelled, I began to consider the long term consequences of my solitude, and made a conscious effort to focus on my social skills and to find new friends.
As a result, I am a very different person today compared to back then (I'm also, for the most part, secretive about having been in special ed, for reasons I feel don't need to be explained). That said, the difficulties of being on the spectrum still follow me, despite my efforts, as anyone who entered the thread about my unemployment could see.

This year, in particular hasn't been good to me, as in addition to my job struggles, the group of friends I had since HS have more or less drifted apart, and my social life has taken a massive blow. I could probably find more friends If I put some serious effort into it, but I find I struggle to find the motivation.

While my Era account is less than a year old, I technically started lurking GAF back when I was in high school, so while my account may be young, I've been here more than half a decade.

Fuck me, I never really realized how long it's been.

 

[TaySan]

I guess I should probably properly introduce myself here finally,
I was diagnosed back when I was about 10, but going back even in time than that, it was obvious to everyone but me that I was a bit "Different".
So my mum took me to my pediatrician and I got diagnosed with... ADHD.
Just about every single teacher I had each year had something to say to my mother about me from this point on-wards though, often the same thing "I think your son may have Aspergers syndrome."
Upon reaching grade 5, low and behold, I got diagnosed with Aspergers Syndrome (Now High Functioning Autism), and my ADHD got rendered a misdiagnosis (I still have the attention span of a gnat though).

Until my final years of HS, I was always horribly reclusive, and had little desire to socialize with the vast majority of students.
I entered into the Special Education unit shortly after entering HS, which felt pretty great to a young puffin, as it meant I could keep far away from anyone else.
Alas, as I grew older and wiser, and the very few maladjusted friends I had in SE either graduated or got expelled, I began to consider the long term consequences of my solitude, and made a conscious effort to focus on my social skills and to find new friends.
As a result, I am a very different person today compared to back then (I'm also, for the most part, secretive about having been in special ed, for reasons I feel don't need to be explained). That said, the difficulties of being on the spectrum still follow me, despite my efforts, as anyone who entered the thread about my unemployment could see.

This year, in particular hasn't been good to me, as in addition to my job struggles, the group of friends I had since HS have more or less drifted apart, and my social life has taken a massive blow. I could probably find more friends If I put some serious effort into it, but I find I struggle to find the motivation.

While my Era account is less than a year old, I technically started lurking GAF back when I was in high school, so while my account may be young, I've been here more than half a decade.

Fuck me, I never really realized how long it's been.

Click to shrink...

*high five* Same story as me.
Been lurking Gaf since 2013. Made my account here last December.

 

[Prax]

Speaking of autism and careers:

Penelope Trunk often is all over the place advice-wise but I think she's hilarious (entertaining) and insightful as long as you are good at sifting through things. She has a 3-day course on Best Aspergers Hacks to be successful and avoid feel-good useless advice when it comes to surviving with autism in the world. (a lot of her stuff is geared toward middle class and up or working class entrepeneurs, and coprorate world careers)

https://www.quistic.com/seminar/best-asperger-hacks/

My friend has used her advice to stay employed with a nonprofit and also felt encouraged to get diagnosed and get on meds because of it, so it can't be all that bad.

 

[JonnyDBrit]

And so we slip back into the shadows...