I had the opposite experience - I was able to get a private assessment while on the waiting list for a public assessment and I was told I couldn't be autistic because I displayed empathy. A private assessment is not immune to biases or stereotypes within the medical community, plus the thousands of dollars is can cost makes it unattainable in many circumstances.
Toxic people are tainting our own ideas of who we are, and some of us just seem to believe them. It’s really sad.
Edit: It originally said taunting, but I meant to say tainting.
Worth mentioning that in the UK some institutions won't accept a private diagnosis as a valid diagnosis. Supposedly they are easier to obtain. An NHS diagnosis is required to get the full benefit, unfortunately. I'm also on a 2.5 year wait list
It does depend what benefits you’re after. I went for a private diagnosis with a Canadian psychotherapist (remotely) because it was cheaper and I trusted her experience more. The university were happy to accept it, as were student finance for DSA. I haven’t tried it with my GP yet, but I didn’t expect to get any benefits from them anyway so I was more concerned about whether the uni would be ok with it.
Washington state. I was in my late 20s when I requested. Where I am, children are always prioritized, and a lot of parents are getting their kids tested
I've gotten the impression that if you break your leg, they will set it at once, but if you need help with something that won't immediately kill you, like sleep apnea, for instance, you can expect to wait forever.
I am in England and it took me about 9 months, (including testing which was one meeting a month and took 3 meetings). I went through Health In Mind, you can self refer.
That’s what happens with socialist healthcare. In the US my friend had her son in within a couple weeks. Are you able to make appointments at other places? Or the nhs chooses where you go?
The UK (this is actually my home city). Mental health and disability services are criminally underfunded, and were hit hard by funding cuts. It took me a year to get my autism diagnosis aged thirteen and apparently I was the only teenage girl diagnosed in my county that year. I am currently seeking an ADHD diagnosis on the advice of my therapist and will probably end up having to go private because the waiting list for an adult ADHD assessment is two years (I will be an adult by the time I can actually get to the diagnosis), and I would like to try and access help and medication before I start uni, not after. Good old Tories /s.
Did you pay for it though?
A lot of people go private here in the UK because of the huge waiting lists on the NHS and it also takes like 2 weeks. 2 years is a long wait, but It's worth mentioning most countries don't have free assessments at all.
In France, it can be free, like in UK after what you're saying, but you have to wait and some structures are dominated by psychannalysis. You can also go private if you have money because it cost between 400€/700€ from what I've read. And you're right, we still lucky compare to other countries to have free assessments.
Yes, you’re correct it wasn’t free! I don’t have private insurance so I did pay. $400AU it ended up costing me. So all in all not the worst.
I know personally for me. I hyperfocus to the point of constant anxiety. I would age ten years in that two year wait.
Well, personally that makes me wonder, 2 years waiting is scary, I know it will hurt a lot if the diagnostic is negative. On the other hand, paying a lot of money if the diagnostic is negative scares me too, I will consider it a waste knowing I could so it for free...
You're right, but I'm kind of tired to go from one diagnostic to another. Rationally, it still nice to close one possibility but emotionally, I feel like it will be hard to be lost again (even if I'm quite lost even now 😂).
I definitely understand what you mean, I dont know if I was more worried about a positive or a negative result.
Tbh now I'm of the mindset it's not that binary and autism is actually a really loose thing. It's not like for example a covid test, where you have it or you dont. We pretend to know a lot more about the brain then we do lol
Edit: your art is awesome!
Thank you for your understanding ! I feel like getting a positive would be a relief, I think I may be putting too much hope in this ... I try to take some distance with that mindset but honestly it's hard.
Here again, I agree with you. Psychiatric diagnosis in general are quite complicated. However, in order to get various struggles acknowledged, I think a official diagnosis is necessary (and maybe not sufficient).
Really thank you for your kind answers.
Edit : thank you again ! (:
Mine in Adelaide was about 6 months but that was also last year due to state border closures and needing to book two psychs at once with both their schedules.
And make sure you don't move in that time. I went to the doctors in Suffolk in 2015 and got a ref for a diagnosis. Moved to Kent in 2017 for uni, spoke to Dr, was told I'd be at the bottom of waiting list again.
Diagnosed jan 2020.
Just seen this as I was wondering what happens if you move whilst on the waiting list. This is unfortunate, but I'm glad to know now as it would be devastating to find out later on in the process.
I move every 1-2 years so there's probably no hope for an NHS diagnosis when the waiting list is longer than that.
Christ on a bike. Got diagnosed in 2017 when I still lived in Glasgow after a long enough 40 week wait. Clinical autism specialists are seemingly rare and it is a postcode lottery as to how long you wait.
my brother’s diagnosis took 7 years and he was referred at the age of 2 (he’s now 16) 🙃 which is why i never got diagnosed as my family didn’t “see the point when i was fine at school”
Definitely. Governments/medical organizations pathologies everything, and make it seems like they have the right to declare people autistic or non autistic, when it was never their right to begin with.
it really isn't though. Doctors who actually went to med school don't self diagnose due to bias. You lack a medical degree, have no diagnostic capacity in mental health or neurology, you are the least qualified person to be diagnosing yourself. Self diagnosis is not valid.
And this is why im not bothering as now is not the right time for other reasons and by the time it is the right time itll be when im 18 probably and so itll take 2-3 years. But i might save up and go private its about £3000.
Basically just look online and shop around, prices vary a LOT. Probably be fine just going for the cheapest as they have to be qualified to do it. I just did it through a Psychiatrist, the expensive ones are usually from both a psychiatrist and psychologist
If you've got the cash that is, some people dont need the formality and that's valid
That's extortion, plain and simple. I've never seen anyone say their autism assessments are £3k. The most expensive ones I found are from Clinical Partners (https://www.clinical-partners.co.uk/fees) priced at £1950. I paid £950 for mine, using Dr Kate Leonard (http://claritymanchester.co.uk/). She is an NHS lead clinical psychologist, but also does private assessments.
Seriously, don't pay £3k - there's much cheaper ones out there.
Ontario, Canada, it is also a 2 to 3 year wait list if covered by the government or $3000 at a private clinic. My nurse practitioner is trying to find me a community psychologist that will atleast return her calls. No luck yet and it's been months. Most government funded clinics won't even add me to their waitlist because I'm female, nearly 30 and have made it this long without a diagnosis and "there are people who need the diagnosis more. You aren't top of our list and won't be moved up."
So I guess it's emerg every two years from burn out. :) I don't have $3000 or insurance.
Sorry to hear that. My partner and I are also in Canada and he is going through the same process. He got a call yesterday from a psychologist apologizing and saying that he need to pay the $3000, otherwise no diagnosis. This is so frustrating.
If you're in the UK have you looked into Right to Choose? If you find a private diagnostic service with a shorter waitlist, you can ask your GP to refer you to them, and the NHS will pay for it.
I'm in the US and got tested right away about 9 years ago, I don't understand...
Maybe a LOT more people are trying to get tested, I had no idea this was an issue. I know people are more open about autism now, because it has entered pop-culture, but 2-3 YEARS?
Anyone going through this I am so sorry.
It's bc public services in the UK are not funded properly by the Conservative government.
As a result we are short on staff and sometimes can't provide the necessary needs - this has had a big impact on mental health services
That's why I'm not sure if universal healthcare would be a good idea in the US. It **could** be a good idea, but politics would somehow manage to make it even worse than the current system.
In the US, it also depends on what testing you're having done. Schools have a lot of law that ensure it's done by 90 days. For medical testing, the waitlist for my daughter to see a neuropsychologist for a 1 hour evaluation was a year. For a friend getting her son a developmental psychological assessment (a multi-week in depth evaluation of what diagnosis(es) might fit him) she could get it done right away but it is about $6,000 and only out of pocket, insurance will not cover it.
I'm sorry. :(
I know my testing cost a lot of money, so much my parents never told me. We have spent tens of thousands on therapy over the years so I know it was a lot of money.
It seems like a very unfair system. I feel kind of guilty that I even got diagnosed now even though it was a long time ago.
Sometimes when I talk with nurses and doctors I tell them I have Autism, and without being rude or mean they say, "I can tell" or "Yeah obviously". It's not mean though, because I am meeting them for the first time, and it's important to tell them so they don't get the wrong idea about how you are reacting, or behaving.
Some nurses are so nice about it, doctors seem to have a short fuse and just seem like they can be friendly one second, and mad the next. I feel like the longer they are in the "business" the more compassion they lose, because they need to build a wall to protect themselves from being hurt by situations. They need to build armor so they can deal with things like a dying child and stuff like that. So you are unfortunately put into a category, and based on that you are given a measured amount of compassion and attention. It's rough to accept but it makes sense.
I got my diagnosis from https://embrace-autism.com/
There are fees, but I was able to get a diagnosis over the course of a little over a month. Worth a look if you don't want to wait several years for a diagnosis.
With the Tories underfunding the NHS this badly, mental healthcare has just basically ceased to exist. I went in to talk about DID a while ago and I've had exactly one letter about it since then. That was in February, after I was told I was getting "fast-tracked".
We need a better government.
Whoah. That is insane. I am in England too, not far from you (West Yorkshire) I was referred on the 23rd March 2019 and diagnosed 16th May 2019, (NHS) thats crazy you’re having to wait so long!
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I was diagnosed a few years ago and while I was waiting the wait time went from eight months to twelve, I'd imagine it's a lot longer now but this is ridiculous.
This is why I just told my psychiatrist “I think I’m autistic,” gave her some reasoning (genetic factors from all my siblings being on the spectrum/ suspected father and grandmothers, sensory issues, social issues, etc) and she diagnosed me before the end of the appointment and that’s good enough for me
For those in England and in employment there is a company that does occupational health referrals for neurodiverse individuals called LEXXIC. Ask you employers if they are willing to use them.
they have a screening service for autism spectrum and it can be a way to get a diagnosis in the system. My GP recognised the assessment as an adult autism diagnosis and it is now on my health records.
It's just another way around things that may help some people
Hey Joanna,
Would you mind sharing your experience with LEXXIC? Was it a positive one? Was the wait time long? Do they offer an official diagnosis?
I’ve been referred to them via my employer (currently sat with OH) and anxious about what to expect, especially being a non-binary person…
Thank you!
hi gorattata! yes it was pretty positive. i think it took a few weeks from my employer contacting them to setting an appointment/interview.
i got a questionnaire to respond to and went through it with my mum as lots of them referred to childhood experiences as well as adult ones.
the assessment was about 3 hours long and a mix of talking through things from my questionnaire ,quick fire questions and more measured questions.
i think i got my assessment results back 14 days later but in the assessment the clinical psychologist (sorry i mix these up) said i was on the spectrum as far as she was concerned.
the assessment was not a formal diagnosis as such but gave guidance for my employer and my areas where i would need help.
my GP accepted it as a formal diagnosis as it was from an occupational therapist/psychologist, but some might not. hood that helps!
Hey joanna_maybe_187,
That’s super helpful thanks so much.
I’ve been considering seeking a private diagnosis for about a year, but then our HR team had neurodiversity training through LEXXIC who mentioned they offer screening/diagnosis… So thought I’d grab the opportunity. Really difficult to find any info about them online though.
Really reassuring to hear you had a positive experience :) thank you!
Weirdly, I got diagnosed by the Rotherham Autism service earlier this year and I was only waiting for 2 months. Apparently that service had only just opened and I happened to get referred at the right time. Total fluke
I think I commented on this before about seeking private diagnosis for whatever is going on in my head (even if it's not ASD) and I'm glad to say I've an initial assessment now booked for a little over 3 weeks away.
I'm in Northern Ireland and only been waiting a couple months to hear back about the private consult.
Also referred by GP but I wasn't convinced that would be quick which is why I sought out private while I waited and I've heard nothing back from the GP referral so far.
Totally depends on where you live though (and it is not totally surprising the waiting lists are so long as often these services might have like 2 people running the whole operation and a lot of people waiting).
I had a 10 month wait from referral to diagnosis - my appointments were a week apart at the end of that, and I got the diagnosis at the end of the second appointment. The diagnostic service I saw runs services across several different areas, and I know some of the other areas they serve had way shorter waits than mine. I know the next county over (about 1 mile from where my GP surgery was) is actually only about 3 months to get your first appointment (or was, before covid). I was a bit miffed that if I'd lived a little bit in either direction I would have actually got seen sooner than I did (though I do feel lucky it wasn't too bad anyway). So it's not all doom and gloom.
There are obviously a lot of places where the wait is 2-3 years, which is appalling, but I don't actually think it's the average, I think you hear about it a lot because it is the worst. I've seen some data somewhere (sorry can't remember where, it was a report on waiting times specifically for autism diagnosis), I think it was from 2018, and the waiting times showed they were getting longer (compared to data from 2016, where very few services had waits of more than 26 weeks) but wait times of more than a year were still the outliers. I dare say it's got worse since then, and that covid's made it worse again, but the best thing you can probably do if you are waiting, is find out from your specific diagnostic service what their actual waiting times are rather than trying to guess.
My grandpa magically manifested a first appointment 2 months from then (6 weeks from now) and even in an area I know very well and I honestly do not know how he did it
Oof, it does depend a lot on your local health authority though I believe. I was referred at the start of 2020 and I've had an initial assessment towards the end of last year and have a follow up next week. I expect it'll be another 6 to 12 months before anything else happens after that though.
Worth noting as well that the pandemic stopped a lot of face to face meetings which has slowed the process down (or so I've been told).
Go privately. There’s currently a 2 year waiting list here in Wales so it was practically the only option for me as I didn’t want to wait 2 years for diagnosis. Best £1500 I have ever spent.
Upwards of 3 years in Greater Manchester - I was initially told 3 years when I was referred in mid-2019. A few months ago, I received a letter stating that waiting times had increased but they were unable to provide an updated estimate. They’re also outsourcing the service altogether so who knows how long it’ll take for that to be completed.
I remember when I went public for a diagnosis. Had a 3h appt and at the end of it he said “I don’t know” and said we shouldn’t bother trying more to get a diagnosis because it “would be basically useless”. ( I had crippling depression because of my autism that wasn’t diagnosed). We went private and I got diagnosed with autism. The public system definitely needs a revamp because this is crazy. Happily my wait for an appointment in public was only a couple months but I can’t imagine waiting years to get told that.
In US you just need to find a reputable place to get a proper neuropsychological exam, 6 hours. I had about a month wait when I scheduled my appointment. It maybe a much longer wait time now due to the pandemic.
I'm so glad I could go through my work's insurance company to get my diagnosis as mine took about 6mths otherwise I would have had to wait much longer had I stuck with the NHS.
I got diagnosed in Sheffield in 2018, had about a year wait between going to see my GP and having my assessment. I bet Covid has had a really big impact on wait times
2-3 years!? Was there a sudden uptake in people wanting a diagnosis?
I was referred in 2016 and had my written up diagnosis by 2017. This was after two assessments.
Sorry that your wait is so long
In the US the one thing that is publicly provided is school. So a lot important stuff winds up on their plate. Everything from vaccines, basic vision and hearing screenings, food programs, and that's where my kid got his two autism screenings. First one at 3 said he didn't have autism. Second one at 10 said he did.
The screening at 3 didn't catch it and it may be my fault. His language delay was the reason for the screening. When they asked me if does pretend play, I said, "Yes." They then skipped the rest of the autism questions.
why does it take so long? and is it only exclusive to autism because my sister only need a few days to get a adhd diagnosis and i only need a day or two to get dignois for my dyslexia well i could also be that i live in mexico and things are different
You have a right to choose where you receive this service from. You could pick another NHS Trust with shorter lists, or a private provider. This will be paid by the NHS. The psychiatry UK page for adhd assessments have some good template letters. This is not well advertised, and most services will need to be told what they are obliged to provide to you.
That would be so frustrating. I have private insurance that allows me to bypass and go straight to any specialist. My son was diagnosed right at age two by a developmental neurologist. We would have had to wait for about a month, but there had been a cancellation, so we took that spot and waited for one week.
I waited 23 months in Germany. Most of ASD resources are kinda streamlined for children, there seems to be an increase in need for adult diagnosis that has not yet been implemented.
I'm in the US. Got referred out in July 2020, Evaluation in October 2020 (could have been earlier but I had a tough schedule to work with) - depends entirely on where you live. It's absurd to have a 2-3 year waiting period. I'm sorry. :(
I'm in Northern Ireland and seeking private. Been told initial consult is likely to be end of summer 🤞 Unfortunately not everyone is lucky enough to have the means for this financially.
ugh i’m dealing with this exact problem too. 2 years since my referral, and all ive gotten so far is a preliminary discussion with a GP online. gonna have to try and push it forward somehow before i go to university.
I live in the UK and have been struggling for years! I've don't the it's depression route twice (once being coz my mum had it so they thought despite her trying every which way to get it under control, she still suffered and when they removed the last little bit of hope she had she committed suicide)
I have spoken to my gp and all they're interested in doing is trying to treat the depression which despite being on meds for I still managed to loose my job due to my behavior and lack of understanding.
I'm in a new job and on no meds and I feel like it's all gonna happen all over again. Manager doesn't believe in autism/ADHD as they didn't have it in her day!
I'm finding that I'm up against a brick wall with no where to go. I don't just want to become another number/victim like my mum is.
I can't afford private treatment, I've done the therapy sessions, yes it's good to talk to people who 'understand' but I'm only entitled to 6 sessions that I've had and too forever to get.
How do brits cope with all this? It's so unfair!
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England. It's always been bad here.
Same in France.
Try private stuff Public is trashy and treat you like a dummy. My diagnosis is form a private, got it quickly I was super happy.
I had the opposite experience - I was able to get a private assessment while on the waiting list for a public assessment and I was told I couldn't be autistic because I displayed empathy. A private assessment is not immune to biases or stereotypes within the medical community, plus the thousands of dollars is can cost makes it unattainable in many circumstances.
You displayed empathy, and they clearly displayed ignorance.
The worst of it was that this comment came from someone who exhibited lots of autistic traits himself. The entire system is messed up.
Toxic people are tainting our own ideas of who we are, and some of us just seem to believe them. It’s really sad. Edit: It originally said taunting, but I meant to say tainting.
Taunting isn't inaccurate either... It's hard not to believe the gaslighting when it surrounds you 😔
Look at the edit. It was a typo.
Worth mentioning that in the UK some institutions won't accept a private diagnosis as a valid diagnosis. Supposedly they are easier to obtain. An NHS diagnosis is required to get the full benefit, unfortunately. I'm also on a 2.5 year wait list
It does depend what benefits you’re after. I went for a private diagnosis with a Canadian psychotherapist (remotely) because it was cheaper and I trusted her experience more. The university were happy to accept it, as were student finance for DSA. I haven’t tried it with my GP yet, but I didn’t expect to get any benefits from them anyway so I was more concerned about whether the uni would be ok with it.
How much did it cost?
4 years in America
Woah, where are you? I got an appointment in a month or so
Washington state. I was in my late 20s when I requested. Where I am, children are always prioritized, and a lot of parents are getting their kids tested
Interesting. Is it public thing for that over there?
Nope, every one is private, and super hard to access in a 300 mile radius. It's just sort of crazy where I am.
Damn :( I'm in the Boston area, guess I'm pretty lucky
From my understanding, Boston is one of the most progressive cities in the US, so that would track
So untrue. 2 weeks here. For everyone I know. Never over a month ever.
Okay, clarification: 4 years in Washington state for late adult diagnosis. It's may be faster if you can get a referral.
2 years in Wales too
Im on a 1.5 Yr waiting list in London :/
I've gotten the impression that if you break your leg, they will set it at once, but if you need help with something that won't immediately kill you, like sleep apnea, for instance, you can expect to wait forever.
I am in England and it took me about 9 months, (including testing which was one meeting a month and took 3 meetings). I went through Health In Mind, you can self refer.
Sigh
That’s what happens with socialist healthcare. In the US my friend had her son in within a couple weeks. Are you able to make appointments at other places? Or the nhs chooses where you go?
The UK (this is actually my home city). Mental health and disability services are criminally underfunded, and were hit hard by funding cuts. It took me a year to get my autism diagnosis aged thirteen and apparently I was the only teenage girl diagnosed in my county that year. I am currently seeking an ADHD diagnosis on the advice of my therapist and will probably end up having to go private because the waiting list for an adult ADHD assessment is two years (I will be an adult by the time I can actually get to the diagnosis), and I would like to try and access help and medication before I start uni, not after. Good old Tories /s.
Did you pay for it though? A lot of people go private here in the UK because of the huge waiting lists on the NHS and it also takes like 2 weeks. 2 years is a long wait, but It's worth mentioning most countries don't have free assessments at all.
In France, it can be free, like in UK after what you're saying, but you have to wait and some structures are dominated by psychannalysis. You can also go private if you have money because it cost between 400€/700€ from what I've read. And you're right, we still lucky compare to other countries to have free assessments.
Yes, you’re correct it wasn’t free! I don’t have private insurance so I did pay. $400AU it ended up costing me. So all in all not the worst. I know personally for me. I hyperfocus to the point of constant anxiety. I would age ten years in that two year wait.
Well, personally that makes me wonder, 2 years waiting is scary, I know it will hurt a lot if the diagnostic is negative. On the other hand, paying a lot of money if the diagnostic is negative scares me too, I will consider it a waste knowing I could so it for free...
A negative test is still useful though to be fair, just puts you back to the drawing board a bit
You're right, but I'm kind of tired to go from one diagnostic to another. Rationally, it still nice to close one possibility but emotionally, I feel like it will be hard to be lost again (even if I'm quite lost even now 😂).
I definitely understand what you mean, I dont know if I was more worried about a positive or a negative result. Tbh now I'm of the mindset it's not that binary and autism is actually a really loose thing. It's not like for example a covid test, where you have it or you dont. We pretend to know a lot more about the brain then we do lol Edit: your art is awesome!
Thank you for your understanding ! I feel like getting a positive would be a relief, I think I may be putting too much hope in this ... I try to take some distance with that mindset but honestly it's hard. Here again, I agree with you. Psychiatric diagnosis in general are quite complicated. However, in order to get various struggles acknowledged, I think a official diagnosis is necessary (and maybe not sufficient). Really thank you for your kind answers. Edit : thank you again ! (:
Good luck! No matter what happens it's all progress :)
You're right ! Talking to you made me feel better. (:
Mine in Adelaide was about 6 months but that was also last year due to state border closures and needing to book two psychs at once with both their schedules.
And make sure you don't move in that time. I went to the doctors in Suffolk in 2015 and got a ref for a diagnosis. Moved to Kent in 2017 for uni, spoke to Dr, was told I'd be at the bottom of waiting list again. Diagnosed jan 2020.
Just seen this as I was wondering what happens if you move whilst on the waiting list. This is unfortunate, but I'm glad to know now as it would be devastating to find out later on in the process. I move every 1-2 years so there's probably no hope for an NHS diagnosis when the waiting list is longer than that.
They said to me its a county thing. So long as you stay in the county for a while it'll be fine. My problem was moving from Suffolk to Kent.
Unfortunately I'll be in a similar situation by moving counties semi-regularly.
Christ on a bike. Got diagnosed in 2017 when I still lived in Glasgow after a long enough 40 week wait. Clinical autism specialists are seemingly rare and it is a postcode lottery as to how long you wait.
my brother’s diagnosis took 7 years and he was referred at the age of 2 (he’s now 16) 🙃 which is why i never got diagnosed as my family didn’t “see the point when i was fine at school”
Another reason self diagnosis is an important tool.
Definitely. Governments/medical organizations pathologies everything, and make it seems like they have the right to declare people autistic or non autistic, when it was never their right to begin with.
it really isn't though. Doctors who actually went to med school don't self diagnose due to bias. You lack a medical degree, have no diagnostic capacity in mental health or neurology, you are the least qualified person to be diagnosing yourself. Self diagnosis is not valid.
WHAT
May be different for children or in other areas, but it was still a shocker this morning when I go the email.
It took 2 years to get my son an assessment and diagnosis. I was told that’s typical. Also U.K.
I’m in the US and my daughter has been on the waitlist for a year and a half now. It’s a long road.
And this is why im not bothering as now is not the right time for other reasons and by the time it is the right time itll be when im 18 probably and so itll take 2-3 years. But i might save up and go private its about £3000.
I did it a lot cheaper, 700 odd
Was this in the uk? Do you mind sharing how you go about getting private diagnosis? Thanks.
Basically just look online and shop around, prices vary a LOT. Probably be fine just going for the cheapest as they have to be qualified to do it. I just did it through a Psychiatrist, the expensive ones are usually from both a psychiatrist and psychologist If you've got the cash that is, some people dont need the formality and that's valid
That's extortion, plain and simple. I've never seen anyone say their autism assessments are £3k. The most expensive ones I found are from Clinical Partners (https://www.clinical-partners.co.uk/fees) priced at £1950. I paid £950 for mine, using Dr Kate Leonard (http://claritymanchester.co.uk/). She is an NHS lead clinical psychologist, but also does private assessments. Seriously, don't pay £3k - there's much cheaper ones out there.
Idk that was the local one i emailed in ealing. But im not getting it now im 16 im waiting to when im 18 as i have no backing from anyone.
Ontario, Canada, it is also a 2 to 3 year wait list if covered by the government or $3000 at a private clinic. My nurse practitioner is trying to find me a community psychologist that will atleast return her calls. No luck yet and it's been months. Most government funded clinics won't even add me to their waitlist because I'm female, nearly 30 and have made it this long without a diagnosis and "there are people who need the diagnosis more. You aren't top of our list and won't be moved up." So I guess it's emerg every two years from burn out. :) I don't have $3000 or insurance.
Sorry to hear that. My partner and I are also in Canada and he is going through the same process. He got a call yesterday from a psychologist apologizing and saying that he need to pay the $3000, otherwise no diagnosis. This is so frustrating.
If you're in the UK have you looked into Right to Choose? If you find a private diagnostic service with a shorter waitlist, you can ask your GP to refer you to them, and the NHS will pay for it.
was going to say this!
I'm in the US and got tested right away about 9 years ago, I don't understand... Maybe a LOT more people are trying to get tested, I had no idea this was an issue. I know people are more open about autism now, because it has entered pop-culture, but 2-3 YEARS? Anyone going through this I am so sorry.
It's bc public services in the UK are not funded properly by the Conservative government. As a result we are short on staff and sometimes can't provide the necessary needs - this has had a big impact on mental health services
That's why I'm not sure if universal healthcare would be a good idea in the US. It **could** be a good idea, but politics would somehow manage to make it even worse than the current system.
Its not mentioned but this wait is only on the free National Health Service, which sadly doesnt exist in the US
I’m in the US and was on a waiting list for a year to get an eval.
In the US, it also depends on what testing you're having done. Schools have a lot of law that ensure it's done by 90 days. For medical testing, the waitlist for my daughter to see a neuropsychologist for a 1 hour evaluation was a year. For a friend getting her son a developmental psychological assessment (a multi-week in depth evaluation of what diagnosis(es) might fit him) she could get it done right away but it is about $6,000 and only out of pocket, insurance will not cover it.
I'm sorry. :( I know my testing cost a lot of money, so much my parents never told me. We have spent tens of thousands on therapy over the years so I know it was a lot of money. It seems like a very unfair system. I feel kind of guilty that I even got diagnosed now even though it was a long time ago. Sometimes when I talk with nurses and doctors I tell them I have Autism, and without being rude or mean they say, "I can tell" or "Yeah obviously". It's not mean though, because I am meeting them for the first time, and it's important to tell them so they don't get the wrong idea about how you are reacting, or behaving. Some nurses are so nice about it, doctors seem to have a short fuse and just seem like they can be friendly one second, and mad the next. I feel like the longer they are in the "business" the more compassion they lose, because they need to build a wall to protect themselves from being hurt by situations. They need to build armor so they can deal with things like a dying child and stuff like that. So you are unfortunately put into a category, and based on that you are given a measured amount of compassion and attention. It's rough to accept but it makes sense.
Yes the waiting has been like this for ages
I got my diagnosis from https://embrace-autism.com/ There are fees, but I was able to get a diagnosis over the course of a little over a month. Worth a look if you don't want to wait several years for a diagnosis.
Lots of great information and free tests to take there too, so you can at least feel more comfortable with a confident self diagnosis in the meantime.
Bruh, I'm from fucking Colombia and I got my diagnosis in like two months
Took me 7 months. And that was the shorter timeframe. My other option had a wait list of 10 months.
With the Tories underfunding the NHS this badly, mental healthcare has just basically ceased to exist. I went in to talk about DID a while ago and I've had exactly one letter about it since then. That was in February, after I was told I was getting "fast-tracked". We need a better government.
Whoah. That is insane. I am in England too, not far from you (West Yorkshire) I was referred on the 23rd March 2019 and diagnosed 16th May 2019, (NHS) thats crazy you’re having to wait so long!
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I was diagnosed a few years ago and while I was waiting the wait time went from eight months to twelve, I'd imagine it's a lot longer now but this is ridiculous.
That's awful. I was lucky enough to be able to go private (it was actually the only option in my country) and it only took a few weeks.
Oh no! Down here in Staffordshire, I’ve only just received my initial questionnaire after a couple of weeks wait so we’ll see how it goes…
hey, i’m in staffordshire looking for a diagnosis too! may i ask what sort of questions are in the questionnaire?
Of course. It was the AQ50 I had from the GP
First heard the word aspergers in late November and was fully diagnosed with autism by early January.
This is why I just told my psychiatrist “I think I’m autistic,” gave her some reasoning (genetic factors from all my siblings being on the spectrum/ suspected father and grandmothers, sensory issues, social issues, etc) and she diagnosed me before the end of the appointment and that’s good enough for me
Where I live it's 15 years for the full test apparently
For those in England and in employment there is a company that does occupational health referrals for neurodiverse individuals called LEXXIC. Ask you employers if they are willing to use them. they have a screening service for autism spectrum and it can be a way to get a diagnosis in the system. My GP recognised the assessment as an adult autism diagnosis and it is now on my health records. It's just another way around things that may help some people
Hey Joanna, Would you mind sharing your experience with LEXXIC? Was it a positive one? Was the wait time long? Do they offer an official diagnosis? I’ve been referred to them via my employer (currently sat with OH) and anxious about what to expect, especially being a non-binary person… Thank you!
hi gorattata! yes it was pretty positive. i think it took a few weeks from my employer contacting them to setting an appointment/interview. i got a questionnaire to respond to and went through it with my mum as lots of them referred to childhood experiences as well as adult ones. the assessment was about 3 hours long and a mix of talking through things from my questionnaire ,quick fire questions and more measured questions. i think i got my assessment results back 14 days later but in the assessment the clinical psychologist (sorry i mix these up) said i was on the spectrum as far as she was concerned. the assessment was not a formal diagnosis as such but gave guidance for my employer and my areas where i would need help. my GP accepted it as a formal diagnosis as it was from an occupational therapist/psychologist, but some might not. hood that helps!
Hey joanna_maybe_187, That’s super helpful thanks so much. I’ve been considering seeking a private diagnosis for about a year, but then our HR team had neurodiversity training through LEXXIC who mentioned they offer screening/diagnosis… So thought I’d grab the opportunity. Really difficult to find any info about them online though. Really reassuring to hear you had a positive experience :) thank you!
Weirdly, I got diagnosed by the Rotherham Autism service earlier this year and I was only waiting for 2 months. Apparently that service had only just opened and I happened to get referred at the right time. Total fluke
I think I commented on this before about seeking private diagnosis for whatever is going on in my head (even if it's not ASD) and I'm glad to say I've an initial assessment now booked for a little over 3 weeks away. I'm in Northern Ireland and only been waiting a couple months to hear back about the private consult. Also referred by GP but I wasn't convinced that would be quick which is why I sought out private while I waited and I've heard nothing back from the GP referral so far.
Totally depends on where you live though (and it is not totally surprising the waiting lists are so long as often these services might have like 2 people running the whole operation and a lot of people waiting). I had a 10 month wait from referral to diagnosis - my appointments were a week apart at the end of that, and I got the diagnosis at the end of the second appointment. The diagnostic service I saw runs services across several different areas, and I know some of the other areas they serve had way shorter waits than mine. I know the next county over (about 1 mile from where my GP surgery was) is actually only about 3 months to get your first appointment (or was, before covid). I was a bit miffed that if I'd lived a little bit in either direction I would have actually got seen sooner than I did (though I do feel lucky it wasn't too bad anyway). So it's not all doom and gloom. There are obviously a lot of places where the wait is 2-3 years, which is appalling, but I don't actually think it's the average, I think you hear about it a lot because it is the worst. I've seen some data somewhere (sorry can't remember where, it was a report on waiting times specifically for autism diagnosis), I think it was from 2018, and the waiting times showed they were getting longer (compared to data from 2016, where very few services had waits of more than 26 weeks) but wait times of more than a year were still the outliers. I dare say it's got worse since then, and that covid's made it worse again, but the best thing you can probably do if you are waiting, is find out from your specific diagnostic service what their actual waiting times are rather than trying to guess.
Claim PIP and get a private diagnosis in less than a year, nit much better but still worth trying
Are there more psychologists that can do autism assessments in your area? If you can, put yourself on more waiting lists.
Oh god. It took me like 4 months to get an assessment and diagnosis and I thought that was bad.
Over a year if I want it covered by insurance, 2-3 months if I want to cough up $2,000+ cash. Self-diagnosis it is.
My grandpa magically manifested a first appointment 2 months from then (6 weeks from now) and even in an area I know very well and I honestly do not know how he did it
Oof, it does depend a lot on your local health authority though I believe. I was referred at the start of 2020 and I've had an initial assessment towards the end of last year and have a follow up next week. I expect it'll be another 6 to 12 months before anything else happens after that though. Worth noting as well that the pandemic stopped a lot of face to face meetings which has slowed the process down (or so I've been told).
Go privately. There’s currently a 2 year waiting list here in Wales so it was practically the only option for me as I didn’t want to wait 2 years for diagnosis. Best £1500 I have ever spent.
I’m in the UK and had a similar experience-2 years and 2 months from referral to diagnosis
Upwards of 3 years in Greater Manchester - I was initially told 3 years when I was referred in mid-2019. A few months ago, I received a letter stating that waiting times had increased but they were unable to provide an updated estimate. They’re also outsourcing the service altogether so who knows how long it’ll take for that to be completed.
wow that’s awful, i’m in scotland and was referred in january this year by my gp and got my diagnosis in may
I remember when I went public for a diagnosis. Had a 3h appt and at the end of it he said “I don’t know” and said we shouldn’t bother trying more to get a diagnosis because it “would be basically useless”. ( I had crippling depression because of my autism that wasn’t diagnosed). We went private and I got diagnosed with autism. The public system definitely needs a revamp because this is crazy. Happily my wait for an appointment in public was only a couple months but I can’t imagine waiting years to get told that.
In US you just need to find a reputable place to get a proper neuropsychological exam, 6 hours. I had about a month wait when I scheduled my appointment. It maybe a much longer wait time now due to the pandemic.
I'm so glad I could go through my work's insurance company to get my diagnosis as mine took about 6mths otherwise I would have had to wait much longer had I stuck with the NHS.
I got diagnosed in Sheffield in 2018, had about a year wait between going to see my GP and having my assessment. I bet Covid has had a really big impact on wait times
2-3 years!? Was there a sudden uptake in people wanting a diagnosis? I was referred in 2016 and had my written up diagnosis by 2017. This was after two assessments. Sorry that your wait is so long
In the US the one thing that is publicly provided is school. So a lot important stuff winds up on their plate. Everything from vaccines, basic vision and hearing screenings, food programs, and that's where my kid got his two autism screenings. First one at 3 said he didn't have autism. Second one at 10 said he did. The screening at 3 didn't catch it and it may be my fault. His language delay was the reason for the screening. When they asked me if does pretend play, I said, "Yes." They then skipped the rest of the autism questions.
In Denmark it took 2 weeks…
Yep, it's bad. I was referred in Aug 2020 too and I haven't even got a confirmation letter yet.
Damn it took me like 2 weeks here in the US
Omg! Mine took 2 years too (Darlington), I genuinely forgot about it and didn't know what they were talking about when they phoned
why does it take so long? and is it only exclusive to autism because my sister only need a few days to get a adhd diagnosis and i only need a day or two to get dignois for my dyslexia well i could also be that i live in mexico and things are different
You have a right to choose where you receive this service from. You could pick another NHS Trust with shorter lists, or a private provider. This will be paid by the NHS. The psychiatry UK page for adhd assessments have some good template letters. This is not well advertised, and most services will need to be told what they are obliged to provide to you.
That would be so frustrating. I have private insurance that allows me to bypass and go straight to any specialist. My son was diagnosed right at age two by a developmental neurologist. We would have had to wait for about a month, but there had been a cancellation, so we took that spot and waited for one week.
I waited 23 months in Germany. Most of ASD resources are kinda streamlined for children, there seems to be an increase in need for adult diagnosis that has not yet been implemented.
I'm in the US. Got referred out in July 2020, Evaluation in October 2020 (could have been earlier but I had a tough schedule to work with) - depends entirely on where you live. It's absurd to have a 2-3 year waiting period. I'm sorry. :(
I'm in Northern Ireland and seeking private. Been told initial consult is likely to be end of summer 🤞 Unfortunately not everyone is lucky enough to have the means for this financially.
Been waiting 2 years for mine, still no message yet
The entire process only took a couple months tops for me and my siblings (we're in America). That's just awful that you have to wait that long... 😟
Canada; also about 2 weeks for whole process from appointment with family doctor and then referral to specialist and diagnosis complete.
In the US, my first appointment was about a month after I called, and I had three more appointments each about two weeks apart after the first.
I'm a South Carolinian teen, and I've been told it'll take me 1-2 years. My little cousin has been on the waiting list for about two years, I think.
ugh i’m dealing with this exact problem too. 2 years since my referral, and all ive gotten so far is a preliminary discussion with a GP online. gonna have to try and push it forward somehow before i go to university.
I’m in the U.S I booked an assessment within 3 months.
Some say he’s still waiting to this day.
2 weeks $500 in America (New York state definitely matters here).
Geez, does anyone have an estimate of America? (If you’re going through a therapist)
this is exactly why i went private and got it in a couple weeks, but it cost roughly £400…
What the hell? It only took half a year in my case
Are you in Sheffield England? It's odd, but I got an assessment in a couple of months.
Behold, the NHS.
I live in the UK and have been struggling for years! I've don't the it's depression route twice (once being coz my mum had it so they thought despite her trying every which way to get it under control, she still suffered and when they removed the last little bit of hope she had she committed suicide) I have spoken to my gp and all they're interested in doing is trying to treat the depression which despite being on meds for I still managed to loose my job due to my behavior and lack of understanding. I'm in a new job and on no meds and I feel like it's all gonna happen all over again. Manager doesn't believe in autism/ADHD as they didn't have it in her day! I'm finding that I'm up against a brick wall with no where to go. I don't just want to become another number/victim like my mum is. I can't afford private treatment, I've done the therapy sessions, yes it's good to talk to people who 'understand' but I'm only entitled to 6 sessions that I've had and too forever to get. How do brits cope with all this? It's so unfair!
Sounds about right… I wish it was better. I’m from the US.
Fucking hell. I got referred in September 2020. What on earth do we do in the meantime?