I cannot stress enough that if you are an adult and you think you have autism, do not get an on the record diagnosis.
It is only filled with negatives. Not only will you likely NOT receive help, but that diagnosis can be used against you for pretty much anything besides getting a job, INCLUDING YOUR POTENTIAL CHILDREN.
Ah yes, the global mental health stigma that is very real and will not go away.
(ADHD here)
If I may ask, what sort of negatives could happen? How would the diagnosis be used against you in various situations? How would it be used against your children?
I think it’s more like, if you’re ever in a custody dispute your diagnosis can be used against you.
There are countries like New Zealand that won’t allow you to immigrate to their country if you have Autism. Now, while one might not particularly want to migrate to that specific country, that just displays what kind of stigma there is in the world against auts.
Ouch that’s ableist af… probably better not to move there anyway then IMO
I’m so sick of seeing this particular piece of misinformation, you absolutely can immigrate to New Zealand with diagnosed Autism.
Those restrictions essentially only apply to people who require full time carers (i.e. who need a large dollar amount of support needs, who can’t pay for it themselves).
Misinformation lol. It has nothing to do with whether they need full time care but how much monetary cost there is. $41k over a few years is the limit.
Your country denies entry to disabled people on the basis that they supposedly can’t bring in any value of their own. It’s a disgusting policy.
Can’t speak for NZ. In Australia because we have healthcare and other benefits, the fear is that permitting non-working immigrants to become citizens will mean they are a net burden on the economy. Can’t let everyone in. Got to draw the line somewhere. It sucks for those that don’t pass the bar but if I were gatekeeping immigration I’d choose the subset most likely to make the country better; net contributors. Let me just say I’m not sure what our official policy is. I am just providing an opinion. I guess autism would be a red flag to an immigration official. If someone was autistic and contributing to the nation I personally wouldn’t have an issue. You can come hang.
How much money someone might potentially make is a fucking gross way to view human beings, and it being normalized under capitalism doesn’t make it any better. It might actually make it worse, because there’s people like you who somehow buy into it.
If you were gatekeeper, how would you discriminate?
To clarify when I say contributing that’s more just dollars. It could be anything that lifts us up.
Thanks for the honesty. That is hopelessly cruel, some of our highest value industries are powered by autistic people’s labor.
Don’t disagree.
Straight up fired from your job, although not exactly because of that reason, it’s just they’ll find one that they won’t get sued for.
Your employer isn’t privy to that info unless you tell them.
Witch is why (in amarica) most service workers heavly stress that you to not give that information away to your employer
That’s how I felt when I got diagnosed with severe anxiety.
“Well that explains it…FUCK! Now I have that to deal with. What do I do?”
Turns out being diagnosed with anxiety is anxiety fuel. There’s no help because it’s so personal. just someone adding on more shit to deal with and some generic advice that doesn’t really help.
Rejecting the diagnosis was a big part of overcoming it.
I don’t know about your experience, but anxiety is something every therapist is trained for. It’s extremely common and there are specific courses and school of thought for it. You can take dialectical behavior therapy, cognitive behavior therapy, and a lot more. There is help for people with anxiety.
It’s possible you may not be able to find affordable help. I was in that situation and couldn’t get help for years. All I know is that ignoring doesn’t help in the long run. My therapist taught me that the body remembers, which means the anxiety you feel will build up in the form of body stress and tension.
I know this post may cause more anxiety but i feel like i needed to make it because i don’t want people with anxiety to feel like they won’t have support to the extent of those with autism. The difference in support isn’t comparable. There are so many more resources for anxiety than autism.
Or the many people who have experienced doctors that’ll just prescribe some tablets that are very addictive/not for long-term use (benzodiazepines for example), or something that’s less effective at stopping anxiety symptoms such as hydroxyzine.
Good therapy is hard to come by, and even harder when you’re too anxious to seek it out, but it’s one of the only ways to get better, sadly there’s no magic pills for GAD yet.
From what i got to know, many people are now using some well-known but mostly criminalised (but now again put to clinical research) substances, in miniscule doses, successfully for anxiety relief. Of course, i can not directly recommend trying them as reactions, at least in large psychedelic doses, are widely unpredictable and i do not know about their use in general anxiety (although i’d love to know). Procurement will likely be illegal too, so one has to find a trusted source and should make use of test kits for purity testing. All i can say is that they are generally seen as non-addictive. We are adviced to do our own research, not least on their usefulness together with other medications (ie. neuroleptice, benzodiazepines, barbiturates).
I would disagree with you. Laws regarding mental health conditions vary from place to place. But, speaking for my country (Lithuania), the restrictions are not that bad, it’s only affecting guns and adoption (nobody’s tossing away your children). Driving license is “dealt individually” but restrictions have almost never been enforced, unless for people with severe neurological/eye-related conditions. The psychiatrists are not willing to lock down people with mental health conditions. This is what a professional told me. Mental health records are kept away from the private sector by to the GDPR.
On the other hand, we have other problems in healthcare, like corruption in the public health sector, especially hospitals, and prioritizing young patients with a ‘perspective in life’ over the old or lifelong-disabled ones.
NL here. The driving license example is quite interesting in my case. When I initially got my license, they gave me a shorter license and required me to go via a psychologist to have it extended. Somewhere between then and when I had to renew it three years later, the rules were changed, and special cases like mine were being rolled into the regular system. So now I have a regular driving license.
Yeah nah, if you can pass as neurotypical you should. This world is fucking hostile and a diagnosis sticks to you for life. Tensions are high enough today that nearly any European country could become fascist by the end of the next three decades.
Sometimes I wonder if all the world’s medical books have a typo that says autistics turn normal or die at the age of 18.
More that our capitalist masters want us to be useful to them or not a burden, even if that means dying of starvation or exposure to the elements.
It’s not personal, since they dont care why you aren’t useful. If you were paraplegic or blind they’d want to toss you into a composting machine just as bad.
There was a scandal in LT that people with autism, especially ones with Asperger’s, have had their diagnosis ‘magically disappeared’ in the med records after 18. And a study showed that, while there were registered thousands of autistic children under the age of 18 in Lithuania, only 17 or so autistic adults were registered in the whole country.
That’s… something. Did anyone figure out why?
I reviewed the newsletters, the psychiatrists cite the ‘Soviet legacy’. Grunya Sukhareva did some research on autism, but there was probably not enough made research into adults. Besides, mental health in the USSR had a very shady history.
More like 5-6. My son is autistic and finding services for a 12 year old is difficult. He is level 2 and it is near impossible for us to find services for him. Either places will only work with level 1 or you have places that treat everyone as level 3.
This is why I don’t bother. I put together a list of things that are typical signs that I have, just to convince myself. It’s actually a negative to get it officially diagnosed since then I’d be considered disabled for all the things that exclude disabled people, but not have any benefit since there’s pretty much nothing positive that is for autistic adults. Better to just keep masked in my public life. Other than social media, I’m not desperate to hide it or anything either.
Probably in the US there is no help, but in other countries, especially in Europe, there definitely is.
Well, it’s not much better in Germany tbh. Even getting diagnosed included enormous waiting times and most help afterwards is dedicated to make you able to be part of the workforce.
For most things, but ASD is still a work in progress.
Europe, specifically EU and the EEC, follow the World Health Organization. The medical sources for ASD will then be the ICD (International Classification of Diseases). This thing. It’s still basically on ICD version 10, which was written in the 1980s and first official version was released in May 1990. This classifies Autism as a disorder with “bizarre motor behavior and social coldness in children age 3 or below” and recommending “behavioral therapy” as a treatment. source. It also has Aspberger as “A childhood disorder predominately affecting boys and similar to autism”.
Anyway, WHO finally managed to move on up to officially adopt ICD 11 in 2022. This has a description of ASD that is more on the level of DSM-V and basic human fucking decency. Does that mean we are on ICD 11 now? Not really. Rollout takes time. National medical services have started making the localized versions needed for the ICD 11 to work in each country, along with translations etc. This is not in place everywhere yet.
Then there is doctors and psychiatrists who need to catch up to the changes. Specialits are very on the ball, fortunately, but General Practicioner doctors are not. Understandably so as they have “everything” they need to deal with and stay up to date on. It’ll take many years before a general doctor, general psychiatrist, or school nurse can be expected to understand ASD on a modern level.
What would exclude you by being diagnosed? Honest question.
In Norway, military service.
Is military service mandatory in Norway or is it voluntary?
It’s a weird mix of both. It’s mandatory conscription for 12 months after secondary high school, butttt the military haven’t been able to take in that amount of people since the 90s. So now they are so selective it’s effectively voluntary. People who want to go can’t if they don’t pass a bunch of tests.
Immigration into New Zealand for example, difficulties with custody procedures…
Here’s an example of it in action
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Would your childhood diagnosis not still apply?
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I’m not autistic, do what services would you like to see?
Not op, but I’d like to see therapists that are experienced in helping autistic adults navigate and process living in a neurotypical world.
That and relational stuff.
I’ve only been able to attend a few sessions with an autistic adult focused therapist, and it was very helpful. They did a great job of prioritizing what we could tackle from week-to-week and it was instrumental for me getting my first job after college.
Which is the other thing that would be really great, some kind of resource that could help autistic adults with the job application process. Mostly with how to interact with recruiters, how to set expectations, and specialized interview prep.
I’d like some sort of “don’t get fired/quit” support.
I never make it long in jobs, I just can’t do all the things all the time, and burn out super quick (I know these jobs are wrong fits for me, but good fit jobs are really hard to land, and I’m already way too old to not have steady employment history so kinda fucked at this point on those)
I tried to get a regular therapist to help me with strategies, since I can’t find a specialist (from an adhd angle, which I’m also dx with) and it was absolutely unhelpful.
It was a lot of “just do this thing that’s the exact opposite of who you are fundamentally and you’ll be fine!” “What do you mean you can’t tolerate an office environment? Just ask for walking breaks!” (These jobs are rigid af) “what do you mean you are worried you’ll give too many personal details and/or irritate your coworkers with your exhausting over talking?”
Like I can get a job, but at this point I’m old enough to know I can’t hold it for more than a year (I’ve never been fired, but I think it’s because I never last long enough for it to happen), so I’m just going to go back to contracts, it’s the only way I can be employed and not have to worry about screwing it up by being who I am…
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Have a friend who cannot even get on a waiting list for this type of therapist.
I had to schedule my assessment six months in advance
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There definitely needs to be better support for the whole employment process, the statistics there are pretty bad.
I don’t know if they have them in the UK, but I hate those stupid employment tests where they try to determine your personality to see if you fit. They are so anxiety inducing and I have never gotten a callback or job that had one of those. EVER. I hate them for the life of me.
Also not OP, but some things that would help:
- Some official national information repository on rights, resources, therapists with relevant knowledge, etc
- Legal protections against autistic behavior being used against you in court, so you don’t have to mask and risk coming off as a psychopath or be open and risk being taken as mentally incapable
- Legal requirements for accomodations in the workplace - many jobs assume you can work in an open floor plan next to loud people and can legally fire you if you don’t accept it
- Right to have an assistant when dealing with unemployment offices, or disability or sick leave. Right now it’s a system that expects you to understand the laws better than the bureaucrats processing you, perform constant complex paperwork, and will punish you severely if you do wrong. Pushing your executive dysfunction through this nightmare while already on the brink of depression due to unemployment or long term sickness is possible if you are “high functioning” but it does drive people to become depressed to the point of developing chronic shit.
- A right to have your opinion matter more than normal in medical situations, due to masking making it harder for the doctor to assess if you are suffering. “Yes I am in quite intense pain I want the painkiller please” to be met with painkillers, not “you aren’t screaming your head off like normal people, so you’re just focusing too much on it - try taking deep breaths”. Or to be allowed anxiety medication without breaking down in a sobbing heap at the doctor’s feet like normal people.
If anyone wants to respond “that’s wrong! this is already accomodated for”, please also state your country so people who live there may be aware.
I’d just like more visibility so that schools (US) and workplaces can be easier to negotiate with autism. The more people who are officially diagnosed or confident they have autism and can speak out loud about it, the more our concerns can be built into the systems for the next generation.
This is one reason I am glad to have been diagnosed at an early age. I was lucky enough to get the different therapies (speech, and occupational) that I had needed and I definitely wouldn’t be getting anywhere near the same treatment as I did back then, now.
You guys know that a lot of medications that target severe mental health issues are also used off label for autism right?
There are also therapists that specialize in adult autism. They are just less common.
This entire thread is just a shitty justification for not taking meaningful steps to treat your mental health issues.
EDIT: Honestly I think the real issue is that the vast majority of you are self diagnosed and looking for reasons to not see a doctor.
Or it could be that some folks live in areas with no access to mental health treatment. Even a diagnosis is a year long waitlist, costs a K and isn’t covered by insurance. Some us have also been seriously traumatized by therapists (conversion therapy for queer folks, ABA, being medicated inappropriately as a child…) Some states also maintain registries of folks with ASD and it can interfere with the ability to emigrate for example.
“Just go get mental health treatment!” Sounds great on paper, but for some of us it’s months of waiting to see the bottom of the barrel - brain drain is real in red states. My state is simultaneously trying to force therapists/mental health professionals to upload client notes to a government portal, while also attempting to put together lists of trans people.
Germany here. Second largest city in the country. There are two places here that diagnose adults. Waiting list says 3-6 years. Afterwards you can get therapy to enable you to work. That’s it. Meaning that you can get therapy if you’re either jobless or on disability pay. I’m neither because I have the benefit of being a stay-at-home wife so I don’t need any help according to our society.
To the downvoter: if you have any other information please let me know. I’d love to know of other options.
Not autistic but I feel your displeasure at the complete lack of actual help. I’ve had fibromyalgia for nearly a decade now (since 21) and it took 8 years of doctors telling me it was all in my head, anxiety, depression, et cetera to get an actual diagnosis.
I feel so exhausted/in pain/traumatised that I feel like I’ll be scraping by on disability for the rest of my life. I feel broken.
It sucks big time!
Stop downvoting this dude - Yeah, they’re being offputting and shitty, and the tone seems to suggest the dysfunction in those who suffer from autism is somehow their own fault, but this is a valid opinion.
Shitty opinion to keep, but we should practice using our words to express displeasure instead of just downvoting - the votes mean nothing. Or atleast downvote and ALSO leave a reply. That way, someone reading this will see that there are people who cared enough to leave a comment.
You are correct that downvoting is kind of pointless.
On the other hand, there has been a bunch of accounts attending this forum lately which appear to act in bad faith (e.g. pathologising and not being interested in the ND point of view, stirring up emotions, sealioning). Interacting with such people will likely lead to a fruitless discussion that just draws energy. These people could look up the non-pathologising resources which were posted already if they were interested.We probably should be aware that there are indeed people who are really scared of any changes to their pathologic-normative competitive model of society. Scared so much that they will get to aggressive efforts to counteract any healing efforts. It probably boils down to the question, “what to do with cognitive dissonance?”
I’m now inclined to not argue/compete but just check someone’s sincerety by asking like, “what is your function in society and what would perhaps be your natural function according to your set of traits, and how can this serve a cure and sustainable future for human civilisation?” (thanks @[email protected] for originally posting this link)
Re-posting and amending this with my other account, as this is supposed to be the more lucid one.
… And yeah, i am aware that the OP account we are responding to has to date only made this single comment in this forum.Thanks for the reply. I usually prefer not to comment, but the thread parent comment was so antagonistic that I first typed out a scathing reply, but then had a moment where I just went “But why?” instead.
I don’t think that bad faith actors actually take the effort out of a place of fear. Instead I think trolling is just for its own sake - if in a moment of clarity someone thinks “Why?” they’d see there’s no point to it. I can’t imagine that anyone would be afraid of something that affects them so little. Autism treatments and lifestyle adjustments seem very far from the usual polarising topics trending today. Its like getting angry your local supermarket added a wheelchair ramp.
Do you think heavier moderation can help in weeding out bad faith actors or will that stifle opposing opinions too much?
Autism treatments and lifestyle adjustments seem very far from the usual polarising topics trending today. Its like getting angry your local supermarket added a wheelchair ramp.
A supermarket in Switzerland started a silent shopping hour twice a week. You can’t imagine how many people argued against it…
Interesting, what does it mean … do they just turn off the speakers or are people asked to be quiet, too?
They turn down speakers and the beeping at the checkout as well as lights. And yes, people are asked to speak in a low voice.
Feels nice 🙂
… one more thought … if there are many who complain about it, the ones who are happy about it should also raise their opinions.
I think that heavy moderation (moderators stepping in with warnings, locks, bans) should be a last resort. I wish for more soft moderation in that the regular subscribers could a job to really act as a kind of community they
claim to behave been falsely labeled. Most such ill-informed opinions could be countered by pointing to previously made posts which contain some relevant links, for example.
no
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