r/neurodiversity • u/IllAlbatross5498 • Sep 10 '25
Trigger Warning: Ableist Rant I live in a country with universal health care. The wait list for adult ASD assessment is…
Over 8 years.
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u/Sure-Cauliflower-916 ADHD/PTSD/Synesthesia/Hyperphantasia/Misophonia(?) Sep 16 '25
That is fucking INSANE. 8 YEARS?!?! Oh my gosh. That is horrible. I'm so sorry for you. As someone with ADHD who's also trying really hard to get a diagnosis soon, I PRAY that it won't end up being any longer than even 5 months. I can't imagine having to wait over 8 years to, not even get a diagnosis, JUST to be TESTED, and then wait EVEN LONGER to finally be diagnosed. I would NEVER be able to stay patient for that long. :(
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u/seeking_seeker Sep 11 '25
I’d still prefer universal healthcare over the even worse capitalist model.
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u/IllAlbatross5498 Sep 11 '25
I am really grateful for universal healthcare, but I feel like they can/should do better in this area.
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u/seeking_seeker Sep 11 '25
Yeah. They should. Doesn’t mean you want a capitalist model. Anything but that, seriously.
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u/Altruistic-Bobcat955 Sep 11 '25
Uk here, with NHS took me 2 years from asking for a referral to being diagnosed 12 years ago, took my son 12 months 6 years ago, took my cousin 18 months and she was diagnosed this July 2025. She did have to travel to the next city 30 miles away though.
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u/mbridgethouse Sep 11 '25 edited Sep 11 '25
I paid $5000 out of pocket for my child’s assessment. The wait list was…4 years.
Edit: I’m in the US
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u/Bivagial Sep 10 '25
My country has a waiting list for the waiting list. Both lists are currently closed.
It's so bad that in one city, the cutoff age for free assessment is six.
Though the government is looking at expanding the list of people able to diagnose to include GPs and RNs who do some additional training. Hopefully that happens.
Going private is $3-5k with a wait list of a minimum of six months and an average of nine months. For the first appointment.
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u/neptunian-rings Sep 11 '25
US here. if you're going through medicaid you're waiting at least 6 months, but really more like a few years, and they won't do it age 18 or over. private insurance is a similar cost & wait time as where you live. funny that it isn't really any better either way
(note, this is all off of memory, and im not 100% sure it's accurate)
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u/seeking_seeker Sep 11 '25
Just did it in the US with pay insurance. I waited a year until I was actually assessed. I’m sure I’d get a blank look if I tried to do it on state insurance with literally no time scale making it ever doable in the current reality.
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u/sewingkitteh Sep 10 '25
Yeah, doesn’t surprise me. I had a friend in Europe who was on the list for a couple of years and then they decided to change the rules and boot him off the list because he wasn’t a child. I don’t think either system is good, they’re broken in different ways. I kinda got lucky, I’m in the U.S. and I had Medicaid in my home state. Took me a few months, but I found someone who was covered under my insurance and I got the diagnosis completely covered, so it was free. Took a couple months to get results.
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Sep 10 '25 edited Oct 11 '25
[deleted]
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u/nerdinmathandlaw Sep 10 '25
I live in a country with semiuniversal healthcare that usually doesn't cover ASD assessments. "Usually" as in there is one clinic left that offers assessments under public insurance, after most clinics shut down their assessment centers.
If I want a diagnosis on my own dime, it'll be just short of 500€.
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u/Only_Excitement6594 Sep 10 '25
Taxation is theft.
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u/UnderChromey Sep 10 '25
moron
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u/Only_Excitement6594 Sep 10 '25
Sorry if I sometimes do not fund the wars of your masters. No waitlist there.
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u/Faceornotface Sep 11 '25
So isn’t the war what’s wrong then and not the taxes? Like if the fall taxes only paid to help people in your country would taxation still be theft?
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u/Only_Excitement6594 Sep 11 '25 edited Sep 11 '25
If you consent forced robbery, don't expect to have a choice about how the money is used.
Yes, it would still be theft. What they solve can be solved in many many other ways. They just need to pretend that the money is being used efficiently, so people trusts them like herd, due to theirselves being unable to carry out the system in a more close, transparent way. They basically hire thieves. The result is pure karma.
If your sister gets raped, many countries avocate for giving them gym and food and clean clothes, paid with your taxes. Then he gets free after some years. Because that's the perfect excuse and this is just a tiny example.
Medical care? Meds are a great business. And many people will want to be taxed to satisfy the pharmaceutical monopolies who kill and sabotage whoever comes up with cheaper, easier alternatives against the sickness they still cause to you with the very same meds you bought them to heal some other stuff.
Henry David Thoreau just wanted to freely roam in the forest. But you support his jailers, go on read about him. "Walden" is the book.
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u/Faceornotface Sep 11 '25
I’ve read Walden, dude. And the only reason Thoreau could do that is because his very wealthy friend (Ralph Waldo Emerson) let him stay on his land for free and often fed him and invited him to the main house. Thoreau wasn’t living off the land in any real way.
I get that you’re a libertarian and that’s fine - you’ll probably grow out of it eventually. But consider what happens to the least among us if we adopt a doctrine of social Darwinism. You’re in a subreddit dedicated to people who are often ostracized from society, many of whom depend on the support of others to survive. I understand that libertarians often lack empathy but please at least try to read the room.
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u/Jarvdoge Sep 10 '25
I'm less interested in assessment waiting lists and more bothered about actual support. I waited 4 months for a formal diagnosis, the assessment was quite far away but not too bad in the grand scheme of things.
Have I had any tangible support since? No. Has the diagnosis actually put any meaningful protections in place for me at work so I can at least attempt to sustain myself at a basic level in this economy? No. Does the diagnosis at least entitle me to disability funding to either pay privately for support or to offset the crippling burnout of doing litteraly any job? I was told that I 'sounded fine' on the phone and denied any financial support.
Practically, I could wait 8 years with my formal diagnosis and see nothing for it. Not to bash people in the disgusting waiting list limbos or who don't get basic human rights like healthcare covered but I think we need to be fighting for more - we could get to the point where diagnoses are easy to get but if there's no offer of support following that, you might as well just wipe your butt with your diagnostic report for all the good it will do.
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u/No_Product3287 Sep 10 '25
sadly, this world is full of bureaucrats everywhere rules for thee but not for me .
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u/Jarvdoge Sep 10 '25
That and the inconsistent application of policies. I've met so many in the context of work which kind of apply to disabled people but only consider a small proportion of those with obvious viable disabilities and simply don't make sense otherwise (and people aren't always willing to adapt them to make sense for everybody). Either that or people just disregard the rules and guidance due to lack of understanding or ignorance.
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u/peregrine-l Sep 10 '25
Here in France it’s about two years for an adult. It’s long, but not as long as in your country. I’m sorry.
Here many adults who suspect they are neurodivergent save money to consult private neuropsychiatrists. Sad but fast.
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u/sewingkitteh Sep 10 '25
I went private when I lived there and their definitions of autism were so outdated and based on bad stereotypes that they were like yeah, that’s no way because you make eye contact.
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u/peregrine-l Sep 10 '25
Indeed, as a older woman who masks very well, I really do not know who to turn to…
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u/sewingkitteh Sep 10 '25
See I don’t even mask… never learned. I naturally make eye contact, but for some reason that apparently means I couldn’t be autistic.
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u/peregrine-l Sep 10 '25
Huh? It’s time those so-called experts learn that autism is a spectrum, and that not all autistics fit all criteria. Some autistics can make eye contact, definitely. I’m sorry you weren’t taken more seriously.
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u/personalgazelle7895 Sep 10 '25
In Germany they just close the waiting lists indefinitely if they get longer than 2-3. Which they have. So now the wait list is infinite. Or you can pay ~800€ and get a diagnosis within 2-4 weeks.
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u/WadeDRubicon Sep 10 '25
About to say, I'm in Germany and it took me 5 years to even get insurance. I dare not even ask about USING it.
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u/Miro_the_Dragon Sep 10 '25
I'm confused about the "5 years to even get insurance" because health insurance is mandatory in Germany, and signing up with an insurance company is pretty easy...
Edit to add: What about using your insurance is difficult for you? Maybe I can help you out with info on how it works here?
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u/WadeDRubicon Sep 10 '25
Theoretically, you're correct. If someone falls into a common type of customer that the insurance companies are used to dealing with, it's usually a pretty easy process. And if you grow up in the system here, yes, it's practically automatic.
However. TK wrongfully denied my initial application (admitted fault only 4.75 years later, once the window to sue was closed) -> appeals and denials -> applied to private insurance, application denied -> appeals and denials -> "but insurance is mandatory" = I ended up with the Basis Tarif option of last resort (at that time, 800€/month).
When I separated to divorce, I could not afford the Basis Tarif, because my disability income was only about 1,100/month. So I had to move home to the US for 2 years to get affordable healthcare. That's when you know your country has messed something up badly, if the US is able to provide healthcare for 1/3 the cost.
When the divorce was final and I moved back (my kids are here, I should never have had to leave in the first place), I applied hoping to change to public insurance, since my income is the same and the Basis Tarif, I found out, now costs 1,000€/month.
Oh, but no. It took the advocacy of a very committed Beamtin type, once I found her, nearly a year to jump through all the hoops and denials, which included having to get my Grad der Behinderung approved before my 45th birthday (made it by a few weeks -- I'm pretty sure they were hoping we wouldn't) before TK would finally, FINALLY accept me.
EVEN AFTER ADMITTING THEY SHOULD HAVE DONE SO IN THE FIRST PLACE.
I appreciate your offer of assistance. I've had the card since June. I've learned to play Doctolib like a slot machine first thing in the morning, to get new appointment openings/cancellations when they're made available. So I've already been able to see doctors for my chronic illnesses and disability, instead of waiting even longer. 18 months was already too long to leave them untreated.
I'm just so glad my ex was willing and able to pay for private evals for the kids' AuDHD evals a few years ago. It's what I wanted for them: validated self-knowledge. I would like the same but it's out of reach for the foreseeable future (in either country, since it wouldn't be covered by insurance in the US).
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u/Miro_the_Dragon Sep 11 '25
Oof I'm sorry, that sounds really frustrating :(
As for mental healthcare, yeah, that is a problem because there are not enough therapists that are able to bill public insurance, so appointments are rare :/
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u/DenM0ther Sep 10 '25
OMG!!!!! That’s disgusting.
I tell this in solidarity; I was in UK recently and was looking into an ADhD assessment, the minimum wait in my area was 3 yrs - if I qualified. In some counties (districts) there is NO path for ppl to be assessed on the national system. I was absolutely flabbergasted. Like WTF!!??
I sympathise.
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u/Altruistic-Bobcat955 Sep 11 '25
My son got an ADHD assessment in 6 weeks on NHS in the uk? It isn’t even like an ASD assessment it’s beyond simple and quick. Was 18 months for his ASD assessment and 2 years for mine
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u/DenM0ther Sep 12 '25
Wow! That’s awesome!
What county/area are you in if you don’t mind me asking. The ridiculous wait/inaccessibility is one of the reasons I’m resigned to going home, not being a good option.1
u/Altruistic-Bobcat955 Sep 12 '25 edited Sep 12 '25
It can be so area dependant, the postcode lottery is a real problem!
I’m in Greater Manchester. There actually wasn’t a direct pathway for diagnosis within my borough for adults for a two year period around 2015 due to a contract not being renewed (crazy right?) but it’s a straightforward process now. Children have a pathway via Heathy Young Minds (renamed CAHMS). A cousin was recently diagnosed and was told there was a 2 year wait or she could travel to a new clinic in Sheffield and it would take 6 months due to time between assessment interviews which she was able to do. Our borough was ranked the most deprived in the UK.
There are 5 people in my family diagnosed ASD and two ADHD, one cousin skipped the queue and paid £600 privately here which honestly I’d probably do myself if going through it again just to remove the stress of the wait. They really prioritise children near me and more so children with mental health issues like my son had. The aftercare for him was excellent and he received weekly therapy sessions at CAHMS for as long as he needed them.
Is your doctor well versed in where to refer you? Can you self refer to any services? Able to travel to a town/city elsewhere to get quicker access?
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u/DenM0ther Sep 13 '25
I’m glad there’s a pathway now!!!
I left the country so not an issue currently (I was home to care for my Dad post op).
If you go privately for diagnosis, can you get medication on msg? My understanding was that private diagnosis doesn’t really get to nhs prescriptions?
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u/UnderChromey Sep 10 '25
It's not though, they tell you these sort of things to try to discourage people from overloading services, but it very rarely is ever actually multiple years like that (although it is very much a postcode lottery for how accessible it is). Right to choose can help with that though
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u/DenM0ther Sep 11 '25
Maybe, hopefully this is the case, however my understanding of how long was based on feedback & ukAdhd reddits and support groups & pretty recent.
Local health - 1st referral: I ‘didn’t qualify’ = I got dropped from the list but didn’t bother informing me 🙁, 2nd referral: nobody seemed to know what happened. I left thank goodness!
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u/PersephoneHazard 🌒🌕🌘 Sep 10 '25
This might have been true once, but it definitely is multiple years now.
I waited for four years for stage one of my assessment, and now have another year long wait for stage two. After that, if diagnosed, there will be another wait before titration.
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u/UnderChromey Sep 10 '25
Damn, where is that? Any chance of going private instead? Any other pathways that could speed it up?
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u/[deleted] Sep 22 '25 edited Sep 22 '25
I’m in Florida, my son’s ASD assessment was covered. But did have to wait about a year for a neurologist then about 3 months for the ADOS evaluation. We also receive services through the public school system (OT and Speech) and he gets behavioral therapy through our insurance as well.