How Long Between Knowing And Being Officially Diagnosed?

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I ran out of space to put the title the way I wanted it to read.
How long between when you first thought you had autism/asperges and you were diagnosed, and how long (If applicable) between asking for a diagnosis did it take before you were officially diagnosed?

You only need to read the first paragraph below to get the gist of it, so you can reply. Ignore the rest.
Also, did being diagnosed help you or hinder you, and did you find after being diagnosed that you were helped and supported in practical ways without being over supported and feeling like one has lost ones independence? (I would say that in my past, I functioned so well through masking as a way of life, that untill life hit me with major trauma of having so many people I knew die around me where my whole life turned upsidown, (Along with other major events), that from then on my Mum and I have not really recovered, though in the last three years I have had such a decline, that the things I could do then and the things I struggle with now, are as if I am a different person completely, so where in the past I couldn't see the need for help in any way other then diagnoses would have helped me understand myself more, and especially understand what the partial shutdowns were (As I have had these almost ever since I can remember... From about the age of seven onwards.. Used to get raging tempers before that age)... but only recently have I really come to the conclusion that if I did not have such a supportive Mum, I would probably not be alive today as there is no way I can financially support myself any longer the way I am struggling along during this current time. It has really worried me to be honest, that though I hate the thought of claiming any benefits, if I am not able to soon, I will be in a position of not being physically able to work due to anxiety/stress etc throwing me into a continual prolonged partial shutdown (With the fear it could develop into a continual shutdown as this would feel like the end of my life... A coma type situation) with no chance of a financial "Buffer" to aid recovery.... Which would seriously hamper my Mum and obviously be (What ever word I can use... Worse then devastating but not quite hell as I would not be burned up etc?) for me.
As I so fear a coma like prolonged full shutdown, that I gave my Mum all my internet details, so she can contact everyone to let them know should such an event happen. (I kinda expect such an event if I take another job and it terrifies me).

But anyway. It took me about two years before making the decision to see a doctor and ask for support, and actually asking, and I expected a yes or no diagnoses from my local doctor there and then (Little did I know that doctors don't know everything so need to pass me to the relevent people who specialize in diagnosing the condition), and I am on the list to be diagnosed and so far I have been on this list for three months. Not long but it seems forever... There is an expected 18 month to two year wait, though hopefully someone is going to help me sort out how to claim sickness benefit? (As I don't have a clue and assumed I had to be employed and be off work and employed to get it?) and I don't habe a clue who to ask and where to go to sort it all out... And I have such a fear these days of jobcentres, that where I should have been signing on several years ago inbetween taking on the occasional temporary part time job (Which has now become too much for me to handle if I am honest with myself... Those of you who have read between the lines will know the recent events of my last employment), that without help, I would not be able to get past this hurdles.
I had assumed I would need to be assessed before I could claim anything, and so I was readying myself to search through my model train collection (Main special interest) to sell most of them to pay for keeping a vehicle on the road until I am assessed, as due to where we live, and when I am like this, walking the couple of miles to the nearest bus stop is out of the question. And I can't claim unemployment benefit truthfully as:
1. One has to be available to work 24/7 (I can't work 24 hours seven days a week so several years ago when I emquired about this and was told those are the rules, I had to sign off as I knew I couldn't do this).
2. One has to be available to work full time. (I know that the way I feel these days that short part time shifts are too much for me. So I can't truthfully say I am available to take on a full time job).
My local jobcentre petrifies me after I had to sign the bottom of blank sheets of paper (They said they were jobcentre staff but were staff from a local training agency) and they had a hard handed inflexible approach, so there is no way I can bend the rules to sign on.. And besides, I refuse to lie. I believe 99% of people have to lie to say they can work 24/7 just to sign on etc. No way will I lie as I would have to pay back every penny I claimed and I can't do this).
Sorry. I am answering a book for a simple question... You can see why I have not been able to sign on or work.. Such an inflexible system and also the physical effects of partial shutdowns that are definately stress related as today, I was able to drive for a lot of miles because I was stress free (Though during breaks inbetween driving where we went in certain places I was calming myself to avoid anxiety by using the hidden stimming methods or withdrawing and spending my time in the car lying across the back seat. (Also tired to be honest).

I think the first time it crossed my mind was around 2016. I got quite obsessed with research in 2017 and joined WP in November. I think my assessment date was confirmed around December 2017 or January 2018.

I went for testing in April 2018 and was told that day, but I didn't get the formal report until May 2018 because it was 20 pages and took time for the doctor to prepare. It was exactly one month to the day between my testing and the follow up appointment, when I got my report.

Wow. So quick! (December or january to april) But understandable as I believe you went through a really touch time?

around 3.5 years

Happened to catch the end of a radio show on the way home late one night where aspergers was being discussed, instantly went as it sounded like they were describing me. Did tons of research, it opened a world to me, a light bulb was switched on. Went to docs, she said it was very unusual for them to refer an adult to a ASD clinic for assessment but based on what I said plus my history she said she would do it. I got the referal then never went along. Just lost my nerve/felt silly about it all. around 3 years+ later I went back to ask for the referral again, got it, went along, was diagnosed with Aspergers. That was 3 years ago next week at the age of 37

For me 'knowing' is too strong a word. Suspecting I might be since c2002 . It was an uphill battle getting anyone at the mental health trust I was previously under to listen to my mention of it . Current trust- Saw pdoc Oct 2018. Get letter saying I've been referred for an assessment about a fortnight later. Got Asperger's syndrome dx in May .

3 months, which I imagine is faster than most people. I had a breakdown, during which I was researching a bunch of psychiatric disorders. Stumbled across autism, said "hmmm... that sounds like me." Got evaluated.

Which country do you live in? How long was it between the asking for a referral and the appointment? Did they contact you when you did not turn up?

It is interesting you mention a radio show. I saw a TV program and because I already had a vaguge idea there was more to it then I thought after dating the lady with asperges, and someone I knkw who was convinced I had it, and also a few other people over the last decade have mentioned it or asked if I had it (Where I genuinely thought they were joking! I was polite to them by saying "No, I don't think so" but inwardly I was thinking "Why did he say that?" *Checks body... Are amm my faculties working etc! Haha!*).

Sometimes, like now, I am a bit panicky inside at the thought of a looming appointment which from what I understand that on the one hand one of the people I met recently to ask for advice said that it needs to be done urgently (I am guessing it must be that it indicates that I am in burnout stage? Or it could be my financial income he is concerned about? I am not very good at reading what people think when I am all "Edgy" like this. Sleeping patterns are way out at the moment). But on the other hand, they are reluctant to push me forward in the queue because understandably, they do not know how urgent the cases are with anyone else. I fully understand this as I really feel for those who are waiting which may be going through some very difficult circumstances and be feeling the effects. Now the queue from where I am is between a year and a half to two years as I have only been 3 months on the list.
(I had assumed when visiting one of my doctors... as the online question thing the ex.girlfriend had told me to take, which gave me a boarderline result, as I didn't knkw what some of the terms meant so I put "No" to those things... and it said to "Contact my doctor"... Well I assumed my doctor would just tell me there and then if I had it or not! You can tell I didn't know a lot when I asked as I had not joined this site to make the questions moee personal. Prior to this I had seen youtube videos by "Ask An Autistic" which are excellent, but the main symptom I was trying to find out about didn't quite fit in with those she described as what she or others had... The cause was the same... I had confused meltdowns with shutdowns. Actually the doctor I saw knew all about meltdowns and said what I described was not a meltdown, but didn't seem to know about shutdowns? Certainly didn't say anything when I described the symptoms.
So for me it was a bit of a bumpy road full of "Hunches" but not a lot of 100% "That's it!" type of thoughts, until I joined this site. The problem I had was to describe the symptoms in ways which people can relate to. It aasn't until someone on this site gave me a link to what someone had written which is all about the various types of shutdowns that one type described me soo accurately I had to there and then read it again to check I had not written the article! I could not believe it!! !

https://everything2.com/user/Zifendorf/ ... s/shutdown

Once I found this, I was then able to shift my mental attention to look for other traits, as prior to this moment, when other traits were mentioned I would be like "Yer. And everyone else on this planet gets those symptoms" because I had them and assumed I was "Normal!" Haha. (I hope no one minds me saying that. I do not mean it to be dissrespectful).
The only other trait like indication that I knew I had is prosopragnosia where I know I have it and my mother has it. No doubt in my mind due to lifes experiences and being told off by aunts etc for ignoring them etc. Apart from aalking past my Mum and little brother when he was a young kid, and thinking "I know them from somewhere but couldn't think where... Until later when I had tried to go through everyone in my mind that I knew to try to find out who they were! I was in a bank quque by thwn at the opposite end of the street when I had the "Urika" moment and I forgot all about the queue, and ran back all the way up the street to find them. My aunties were more like "I know them from somewhere but didn't know from where so I smiled at them and walked off only be told off several months after when they called in and I was puzzled ad they said where and when and I could then recall the event. I habe had entire lengthy conversations with people who knew me and I tried to keep the converstations going introducing what must be strange questions designed to try to get them to say something that would trigger my mind into knowinb who they may be, and even to this day I don't knlw who they were! I must habe lost so many friends like this, or by completely ignoring them altogether.
The most hillarious one was when I was working on the railway. On a break time inbetween trains I walked out my depot which was next to the train station, walked into town and I was on my way back and someone started to talk to me. I was puzzled and I asked him who he was. He replied "Don't you know? You've been workinb with me all morning. You only saw me 20 minutes ago!" HAHA! What he must have thought about me! He even gave his name, but quite often when the faceblindness kicks in, I also get nameblindness when I can't picture who it is or even remember their names. Sometimes, I have "I know them from somewhere" but this can be that I have seen them somewhere and... Well. Example. I met someone in my town which I thouhht was an old maghs teacher. I said "Hello" and started talking to him. He looked muzzled. I said "Arn't you Mr Bowen, my old maths teacher?" He said "No. I'm Mr ******, a counsillor." I recognised his face from the newspaper! I do "Group" faces though, so he was in the same "Group" as my old maths teacher in my mind.

Anyway. I had better post this before I write about the world and back!

I am in England. I received a letter giving me an appointment at a neurological clinic around 3-4 months after my docs appointment. They did not contact me when I didn't turn up.

When I went back for another referral 3 years later I actually then went through my employers private health care and ended up seeing someone fairly soon who was an NHS worker on ASD diagnosis 4 days a week and private 1 day a week.

"Knowing"????

I suspect that you mean "suspecting".

For me the time lag was about fifty years.

When I was like ten, back in circa 1965, I was listening to a talk radio program -with a panel of both shrinks, and actual parents. They were talking about this new thing called "autism". Its like Down's Syndrome, but its not like Down Syndrome. Unlike Downs the kids look normal. And unlike Down's the kids can have normal, or above normal IQs, but they just act strange. Are remote, don't talk, walk funny, and are obsessed with things like spinning objects, and so on. Parents shared their experiences with the shrinks commenting. Was mildly interesting to listen to. But then it occurred to me that these autistic children are just more extreme versions of me. Maybe I have some kind of mild watered down version of this "autism" thing that they are all talking about. But then I dismissed the idea because - apparently- there is no such thing as "mild autism" (if there were the experts would be talking about it).

Forty years later the American medical community officially expanded "autism" into a "spectrum" that included something called "aspergers" (ie they changed their minds and declared that there WERE degrees of autism including mild degrees). Mom and sis pointed out that when I was like 8 I was already "a little professor" (textbook aspie), and like that. Finnally got the official exhaustive battery of test and the resulting diagnosis a couple of years ago.

I discovered what Asperger's really was in mid-January 2016. By about a week later, after taking every online test I could find, I had convinced myself that I probably was an Aspie. I joined this site soon after, and in mid-February 2016, I discovered my medical insurance covered most of the costs of autism diagnostic testing. I found a local doctor who accepted my insurance, and had an available appointment a few days later. About a week after he'd finished the tests, I received the doctor's report in the first week of March 2016 which diagnosed me with ASD Level 1.

So....How long between when you first thought you had autism/asperges and you were diagnosed - 7 weeks
and how long between asking for a diagnosis did it take before you were officially diagnosed? - 3 weeks

I was unusually fortunate to have this all happen so quickly, and at relatively low cost. Getting diagnosed has been a great help to me, as I now understand what's been behind all of these occasional meltdowns that I've suffered throughout my life, and why no one else around me ever had them. Also, it helped explain why those 30 or so self-help books I read in my 20s and 30s never really helped me avoid those meltdowns.

I had always suspected there was more going on than mental health issues, but it took a Google search for 'low spatial and high verbal IQ' which lead to a search for 'NVLD' which lead to a search for 'autism' to consider Asperger's/autism/NVLD might be relevant to my situation .

If all goes as planned:
First suspected in Winter of 2011.
Formal diagnosis in early 2020, mostly at my wife's insistence (she figured it out on her own).
I've already had two psychologists tell me that it is "highly likely" I am on the spectrum so this is just a formality as far as I am concerned.

Always felt kind of different, got told I was shy a lot so I guess I assumed well, that must be it. Then I got less shy but continued to have problems 'peopling' and I do recall having a few thoughts crop up at various times during my twenties. I remember taking the AQ test (and perhaps one or two others?) and scoring over the threshold (or maybe just under in the 'possible') without really considering the questions and going pfft, as if, probably loads of introverted people got similar scores, and I didn't think much more of it beyond that.

Properly though, wasn't until around somewhere between Christmas and April last year. Various things about starting my PhD I think made me really start to dig into whether there was something 'wrong' with me. It was odd suddenly being around people who in one sense are very like me, but in many other ways not-like there I was with similar nerdy shy people and I still had 'peopling' problems they didn't. I thought maybe ADD (I've got a friend with it who'd pointed out some similarities) but quickly realised it didn't fit exactly. My thoughts eventually came back to 'well I wonder if I really could be on the spectrum' and then I found an article about autistic women and could relate to 80-90% of each of the different profiles. Big lightbulb moment-it was like someone had followed me round all my life taking minutes and put it on the internet for me to find. Finally went to my GP end of April and got referred. Got assessed end of Feb this year, diagnosis a week later at the beginning of March.

I went private by contacting a doctor through my University. I had already suffered a stroke and I have CPTSD, so they thought I'd be an interesting case study. I had to rely heavily on my childhood data so that any trauma or stroke effects could be removed from the equation.

My problem is that because most of my school reports said I was daydraming, or I would only talk about trains etc, and these didn't do much acedemically for me, I no longer have them. I didn't see the need to keep them. Right from primary school onwards I was classed as a shy, often withdrawn daydreamer (Daydreaming of trains of course! Haha).... So you see, when my Mum found the old reports, I never saw any need to hang onto any of them.

Do you have your assessment date? I can't remember. If so, you can start working on your Developmental History.