How long did it take for you to get diagnosed as an adult?
This is a long post so bear with me.
I've suspected I've had autism for the past 4 years and I brought it up once to one of my old psychiatrist and she shut me down so fast (because she sucked) and then refused to tell me my diagnosis even though I was an adult. Cut to last year, I'm talking to my new psychologist about some of my sensory issues and he immediately tells me I'm probably autistic and that he's going to ask my psychiatrist to refer me for a diagnosis. It takes 4 months for my referral to go through and for me to get my first appointment.
So then I had a pre assessment where I had a mini interview and and me and my mom had to fill out a questionnaire and stuff and they told me they'd get back to me. They didn't get back to me for 5 months and I assumed I failed the pre-assessment or whatever since they told me they won't get in touch with me at all if they thought I didn't have it. They also told me to not ring them up either because they're understaffed. Anyway, due to my psychiatrist cancelling my appointment three times, I finally see him nearly 10 months after we had a talk about the autism referral. I figured he'd have news for me since he recommended me and they'd contact him first. The dude basically just sat there and asked if I called them since it's not his job to chase this up (he's a piece of s**t but I can't be bothered to change Pdocs AGAIN). He then gives me the wrong number to contact them on and sends me on my way.
I keep calling them for a week and getting a voice mail asking me to leave a message. By this point I started suspecting my Pdoc was being incompetent again and that I should probably look for the number myself. After searching through my house for the referral letter for 2 hours I finally find it and I rang them up. It turned out that I was fit for the full assessment but no-one had actually thought it was important to inform me about this. And then I find out that the adult autism service that I went to are so understaffed and under funded that they're only open 2 days a week and they can assess one person per week and I will have to wait until December 2017 to get a full assessment. Apparently, due to getting new funds they can maybe hire new people and I could be seen in the first half of next year.
TLDR: I will have to wait a whole year to get assessed, which means I will have waited for nearly two years to get diagnosed since my referral.
Note: I live in the UK and my mental health care is provided by the NHS and it's free and that's why there's an abnormally long waiting time. I used to pay for it privately before I realised that I was pouring my money down the drain on sh***y Pdocs for subpar care. Finding a good doctor is like finding a baby unicorn so I figured that I can just get subpar treatment for free instead.
What was your experience like? What happens in this mysterious full assessment that no-one has really explained to me about?
Alright. I just wrote a very long response to this and then my computer sucked it and it's gone. Arghhh.
I suspected I may have Asperger's 3 or 4 years ago. My psych at the time (who was also crappy) dismissed it, and so I put the idea aside for some time. But about 6 months ago (after reading "Neurotribes") I was again convinced that I probably had Asperger's. So I started reading up, some good books, and also joined the forums to find more info (which I did).
Since I'm here in the US my experience will be different, of course. I first looked for an adult autism assessment through my health insurer, which was totally useless. Fortunately, I wrote a post like yours, and since I live close to New York city another forum member was kind enough to point me in the direction of a specialty clinic which just focuses on ASD. It took me about a month to get an appointment with them for the initial assessment. The first appointment was an hour, for her to get a general idea if I might be an Aspie. At the end, she said a full assessment would be reasonable, and in my case (since we all have different issues and character traits) she said it would be about 3 hours. She sent me home with 4 paper based assessments, and then I waited for them to setup my assessment.
I had to wait about 3-4 months for this. They were busy since it was the beginning of the school season, which is understandable for a delay in adult assessments. It was a full 3 hours, with additional and more in depth Q&A, and a very detailed online assessment (which I think screened for all sorts of personality and mood disorders, as well as psychotic features). Once the assessment was done, it would be another month before I got the results.
The results were presented in an hour. She read through my testing, and it was great. It provided insight on not only "my part of the spectrum" but also on my anxiety and depression (as well as attention issues). I received a copy in writing that was a couple of pages long that focused on treatment recommendations which was also fantastic. It will be shaping my therapy moving forward.
The entire thing cost about $2000. I'm hoping to get reimbursed by my health insurance for some of it (and it looks like I might get half back, which I'm fine with since I expected to get nothing). So it's not an inexpensive proposition here.
Anyway, that's my story. I'm sure there are many more, but I'm also sure that struggle may be a common theme. Having to wait a year is pathetic, but when you consider it probably took me 6-7 months start to finish it's not horrible, I guess?
Hang in there!
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Nothing witty here...
Exactly! Your experience is very similar to mine, and I'm sorry that they've acted like clowns with your appointments. This seems to be how it is with the NHS and autism specialists, they must be chronically understaffed to deal with patients throughout the country. The mental health department is a shambles.
I was referred by my consultant to an Aspergers specialist after my parents, without my prior knowledge got on at her. Back in 2014 they'd evidently encountered a program about children with Aspergers syndrome and saw similarities from when I was a kid. I was very depressed at the time and was initially against the referral; anything said or done to me felt like an attack, and I'd retreated into my comfort zones so completely I only ever left the house to see my psychologist. In the end I agreed. Received a letter saying I was on the waiting list and... two years later was posted another letter asking whether I still wanted to be on the waiting list. What the hell? Long story short, we eventually got a date for my assessment, but beware: they would have dropped my case if my mum hadn't bugged them about it.
The thing was staged at a different hospital to my local one - understaffed indeed - and lasted about 5 1/2 hours, with a lunch break in the middle. It was a little upsetting, particularly when I started talking about how ridiculously lonely and isolated I've been. It was also funny, as the specialist talked a great deal with my parents over the things I did when I was little. It overall involved a tonne of sitting down and the specialist doing a lot of writing. She had a hefty amount of papers and we had to go through it all. Many were little questions about how I react to things, lots of sensory questions and many directed specifically at my parents, they talked in depth about my childhood. She took some time away near the end - presumably to add up scores, I think? - and came back to tell us what she thought. It was a big shock for me. I knew of Aspergers of course, the media seems to be giving it increasing coverage these past years, but I'd never really thought what my parents believed was valid. I got a little book in the post later, too. Early days. Good luck with things.

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On hiatus thanks to someone in real life breaching my privacy here, without my permission! May be back one day. +tips hat+
Were in the U.K. are you? That all sounds awful.
Just a suggestion but you could try writing to your local MP. If you tell them about your situation and how it's affecting you then they might be able to pull some strings. I've heard people have had success with other issues.
I brought up autism at one of my initial meetings with a psychologist and was diagnosed in 5 months using a full assessment.
For numerous reasons she's managed to get me an appointment with a specialist psychiatrist for a second opinion and that was quickly too as it was affecting my mental health.
I feel I must be lucky as the Forth Valley area has an 'Autism Strategy' which while not perfect due to funding issues, sounds a lot better than what other people get. I think my longest wait was when I waiting for my initial referral to go through. It bounced between psychology and psychiatry for around 6 months and I had to chase it up.
Another suggestion is checking out this lady here http://www.taniamarshall.com/index.html. I can't couch for her personally but I did consider using her service at one point. She can provide assessment via skype (for a cost of course) and while that's unlikely to get you officially recognised here in the UK, it may give you some peace of mind plus a report to show a psychologist/ psychiatrist when you eventually get to see someone.
Good luck!
_________________
Diagnosed ASD Aug 2016, confirmed Dec 2016.
Also have OCD and various 'issues'.
The entire thing cost about $2000. I'm hoping to get reimbursed by my health insurance for some of it (and it looks like I might get half back, which I'm fine with since I expected to get nothing). So it's not an inexpensive proposition here.
Anyway, that's my story. I'm sure there are many more, but I'm also sure that struggle may be a common theme. Having to wait a year is pathetic, but when you consider it probably took me 6-7 months start to finish it's not horrible, I guess?
Hang in there!
Hello, thank you for your words of encouragement. I'm happy that you've managed to get a proper assessment where you live. It might just be me but I feel like america has a faster/better diagnosis process for mental health related things. I wonder if it's because you have to pay for it that the care is better. This is in comparison to how things are done with the NHS of course. I think the waiting time would be similar to what you've experienced if I went private but after years of jumping hoops to get proper treatment I'm terrified of Pdocs.
I hope the assessment process you've describe is similar to the one I'll get because I think it's really useful to be screened for personality and mood disorders as well, since like you've said, it provides a greater insight into exactly what I'm dealing with. I just feel like all of my disorders are interconnected. Part of why I want to get diagnosed is because I hope that it will inform my future psychiatrists better on how to cater a specific treatment for me. I've always confused my other psychiatrists because while I present with "typical" depression, they will then go on to say that it presents in such a complex way and usually look mystified by me. One psychiatrists tried to diagnose me with an entire category of a personality cluster instead of a specific one from the cluster. Sometimes, they think I'm straight up lying because they think I "contradict" myself when I'm really just talking about the symptoms I have across the board of things I experience. I love that co-morbid lifestyle.
Anyway thank you. Hope you have a nice day.

I was referred by my consultant to an Aspergers specialist after my parents, without my prior knowledge got on at her. Back in 2014 they'd evidently encountered a program about children with Aspergers syndrome and saw similarities from when I was a kid. I was very depressed at the time and was initially against the referral; anything said or done to me felt like an attack, and I'd retreated into my comfort zones so completely I only ever left the house to see my psychologist. In the end I agreed. Received a letter saying I was on the waiting list and... two years later was posted another letter asking whether I still wanted to be on the waiting list. What the hell? Long story short, we eventually got a date for my assessment, but beware: they would have dropped my case if my mum hadn't bugged them about it.
The thing was staged at a different hospital to my local one - understaffed indeed - and lasted about 5 1/2 hours, with a lunch break in the middle. It was a little upsetting, particularly when I started talking about how ridiculously lonely and isolated I've been. It was also funny, as the specialist talked a great deal with my parents over the things I did when I was little. It overall involved a tonne of sitting down and the specialist doing a lot of writing. She had a hefty amount of papers and we had to go through it all. Many were little questions about how I react to things, lots of sensory questions and many directed specifically at my parents, they talked in depth about my childhood. She took some time away near the end - presumably to add up scores, I think? - and came back to tell us what she thought. It was a big shock for me. I knew of Aspergers of course, the media seems to be giving it increasing coverage these past years, but I'd never really thought what my parents believed was valid. I got a little book in the post later, too. Early days. Good luck with things.

Oh my gosh, while I appreciate the NHS, I really do get frustrated by them so much. Something NEEDS to be done and like you've said their mental health department is appalling. I only put up with it because I've grown so apathetic and I basically gave up on the idea of ever getting proper care or being treated like a human.
I can't believe you had such a long assessment. I was told it lasted half a day and of course I took that literally and thought they meant 12 hours but thankfully it's just 3-4 hours. It's a relief to know that they give you the results on the day, I'd hate to constantly wait for it. From what you've told me, I probably do need to chase them up once a week to get this sorted out but I always feel like I'm bothering people.
Although, I'm not keen on assessments where my parents are the main focus rather than me. It's very uncomfortable when people have a conversation about you while your in the same room and pretending like you're not there. Some of the things they when say discussing symptoms often feels like they're criticising you personally for things you can't help. I have a bad experience with my current psychiatrist dragging my mother into the room (even though she didn't really want to be there) to discuss every single detail about me after he was finished talking to me. It was so paternalistic and it felt like I had no autonomy. Although, thinking back on it now, I wonder how much of it had to do with him subconsciously perceiving me as being on the spectrum and deciding on his own that I'm incapable of having an adult conversation about my mental health.
And thank you! You've been very helpful.
Just a suggestion but you could try writing to your local MP. If you tell them about your situation and how it's affecting you then they might be able to pull some strings. I've heard people have had success with other issues.
I brought up autism at one of my initial meetings with a psychologist and was diagnosed in 5 months using a full assessment.
For numerous reasons she's managed to get me an appointment with a specialist psychiatrist for a second opinion and that was quickly too as it was affecting my mental health.
I feel I must be lucky as the Forth Valley area has an 'Autism Strategy' which while not perfect due to funding issues, sounds a lot better than what other people get. I think my longest wait was when I waiting for my initial referral to go through. It bounced between psychology and psychiatry for around 6 months and I had to chase it up.
Another suggestion is checking out this lady here http://www.taniamarshall.com/index.html. I can't couch for her personally but I did consider using her service at one point. She can provide assessment via skype (for a cost of course) and while that's unlikely to get you officially recognised here in the UK, it may give you some peace of mind plus a report to show a psychologist/ psychiatrist when you eventually get to see someone.
Good luck!
I don't really like giving out personal information on the internet so I won't give you the city but I live in the East Midlands. Unfortunately, I'm the type that has trouble filling out forms by myself and I panic when I have to write a formal email or letter to someone. But thank you for you advice, maybe it will help someone else instead.
I feel like you probably live in a good area. Getting a diagnosis within 6 months sounds amazing. I think had to wait that long to get a referral for actually getting a psychiatrist through the NHS. Also, I'm relatively new at seeking out a proper diagnosis so I'm not sure if where I live has any strategies in place for autism. And if they did, I think they could do with marketing it a bit more like in local GP offices so it was more accessible to people.
From when I rang up my autism services, I was informed that due to specialists being specialised in dealing with autistic people who are considered as having learning difficulties, they had trouble finding people who actually know a bit more about "high functioning" autistic adults (I personally hate functioning labels). It just sounded like that the specialists themselves don't know how to diagnose us because they're largely unprepared for the millions of adults who slipped through the cracks. I also feel like they can't comprehend the idea of autistic adults in general. They didn't take into account that autistic children grow up to be autistic adults who are completely different to children as they've gone through puberty and the emotional roller coaster that comes with it.
I had the same frustrating experiences with incompetent Dr Dumbasses and being jerked around here in Canada before I finally got a referral to the lone publicly funded psychiatrist for all of southern Ontario to do my adult autism assessment(I think I am on the depending on who I talked to, which would have been 18 months). Of course I didn't want to wait a million years and I was tired of running into doctors and psychiatrists who didn't know jack s**t about AS so I paid out of pocket to be assessed at this autism clinic for 4 appointmentd at $145 each. I just use psychologytoday.com website, called around asking each psychologist if they specialized in assessing adults on the autism spectrum till I found one that did. That waa my approach.
I saw an assessor who wasn't a doctor who preformed the assessment which eventually got handed to a neuropsycholgist who diagnosed me with Asperger's Syndrome. It wasnt as lengthy and thorough as other more costly assessments but it was an official diagnosis. The whole process from start (booking an appointment) to getting a diagnosis was about 6 to 7 weeks.
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