this post was submitted on 12 Sep 2023
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Autism

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[–] havokdj@lemmy.world 92 points 1 year ago* (last edited 1 year ago) (4 children)

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.

[–] just_change_it@lemmy.world 57 points 1 year ago

Ah yes, the global mental health stigma that is very real and will not go away.

[–] agent_flounder@lemmy.one 36 points 1 year ago (3 children)

(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?

[–] Thepinyaroma@lemmy.world 66 points 1 year ago

I think it's more like, if you're ever in a custody dispute your diagnosis can be used against you.

[–] Commiunism@lemmy.wtf 25 points 1 year ago (7 children)

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.

[–] lemann@lemmy.one 14 points 1 year ago

Ouch that's ableist af... probably better not to move there anyway then IMO

[–] Same@lemmy.world 5 points 1 year ago (1 children)

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).

[–] rambaroo@lemmy.world 8 points 1 year ago* (last edited 1 year ago)

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.

https://www.theguardian.com/world/2022/apr/26/new-zealand-denies-entry-to-autistic-daughter-of-immigrant-couple

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[–] GreenMario@lemm.ee 16 points 1 year ago (1 children)

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.

[–] legion02@lemmy.world 22 points 1 year ago (1 children)

Your employer isn't privy to that info unless you tell them.

[–] HelloHotel@lemmy.world 3 points 1 year ago

Witch is why (in amarica) most service workers heavly stress that you to not give that information away to your employer

[–] saltesc@lemmy.world 15 points 1 year ago* (last edited 1 year ago) (1 children)

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.

[–] SasquatchBanana@lemmy.world 20 points 1 year ago (1 children)

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.

[–] kungen@feddit.nu 3 points 1 year ago (1 children)

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.

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[–] raubarno@lemmy.ml 13 points 1 year ago (2 children)

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.

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[–] Deestan@lemmy.world 57 points 1 year ago (3 children)

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.

[–] uriel238@lemmy.blahaj.zone 20 points 1 year ago

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.

[–] raubarno@lemmy.ml 10 points 1 year ago (1 children)

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.

[–] Deestan@lemmy.world 3 points 1 year ago (1 children)

That's... something. Did anyone figure out why?

[–] raubarno@lemmy.ml 6 points 1 year ago

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.

[–] hactar42@lemmy.world 10 points 1 year ago

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.

[–] irotsoma@lemmy.world 43 points 1 year ago (2 children)

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.

[–] lauha@lemmy.one 12 points 1 year ago (2 children)

Probably in the US there is no help, but in other countries, especially in Europe, there definitely is.

[–] Lhianna@feddit.de 11 points 1 year ago

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.

[–] Deestan@lemmy.world 10 points 1 year ago

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.

[–] 6daemonbag@lemmy.dbzer0.com 9 points 1 year ago (3 children)

What would exclude you by being diagnosed? Honest question.

[–] Deestan@lemmy.world 4 points 1 year ago (2 children)

In Norway, military service.

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[–] average650@lemmy.world 20 points 1 year ago (4 children)

I'm not autistic, do what services would you like to see?

[–] shiroininja@lemmy.world 55 points 1 year ago (3 children)

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.

[–] Helldiver_M@kbin.social 22 points 1 year ago (2 children)

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.

[–] ApathyTree@lemmy.dbzer0.com 19 points 1 year ago

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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[–] Franzia@lemmy.blahaj.zone 2 points 1 year ago (1 children)

Have a friend who cannot even get on a waiting list for this type of therapist.

[–] shiroininja@lemmy.world 2 points 1 year ago

I had to schedule my assessment six months in advance

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[–] gnutrino@programming.dev 20 points 1 year ago (1 children)

There definitely needs to be better support for the whole employment process, the statistics there are pretty bad.

[–] SasquatchBanana@lemmy.world 14 points 1 year ago

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.

[–] Deestan@lemmy.world 6 points 1 year ago* (last edited 1 year ago)

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.

[–] Franzia@lemmy.blahaj.zone 4 points 1 year ago

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.

[–] AceFuzzLord@lemm.ee 3 points 1 year ago

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.

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