Survey: Are You Officially Diagnosed with ASD?

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Please participate in this brief survey...Thank you in advance for your cooperation...

Do you think that you are on the spectrum?...
If so, do you know with certainty based on an official medical diagnosis?...
Would you please describe the circumstances that led to your diagnosis?...

If you were diagnosed as an adult, was it as a result of a commorbid medical condition?...

If you were diagnosed as an adult, was it as a result of been encouraged by a well-intended close friend or relative or romantic partner to seek a medical diagnosis?...
If and when you were encouraged by a close friend or relative or romantic partner to seek a medical diagnosis, what was your initial reaction?
Were you upset, grateful or indifferent towards he or she who suggested the possibility that you are on the spectrum?...

If you were diagnosed as an adult, was it as a result of your own self-awareness of your autistic traits that led you to research said possibility?...

Would you recommend undergoing an official diagnosis to those who have not yet been officially diagnosed?...
If so, what are the benefits of doing so, if any, according to you?...

If you have yet to be officially diagnosed, what is preventing you from getting said diagnosis?...

Once again, thank you in advance for participating in the above brief survey...And thank you in advance for elaborating here about your personal experience surrounding your diagnosis...

I have no "medical diagnosis" of ASD, only identification by a professional psychologist experienced with "female-type" ASD.
It was done when seeking treatment for reocurring depression and other mental health problems.

Late Childhood/Adolescent.
No one pointed out anything considered odd in spite of all sorts of school concerns.

Referred upon a SPED teacher's class observation.
Got diagnosed by an official diagnostician few years or so after.


Had anyone any better know sooner, I might've been diagnosed way younger.
Had the observation never happened, I might've never be diagnosed even to this present.

Gained Number Post Count (1).
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Lose more time here - Updates at least once a week.

I'm diagnosed with PDD-NOS. if I could be bothered to get a dx reflecting the DSM changes, I'm guessing I'd be ASD level 2.

My ex and I went in for counseling years ago, ended up doing individual therapy. That therapist thought I was on the spectrum, recommended further evaluation. Turns out her hunch was right. In all fairness though, my ex asked if I was on the spectrum years before. He knew it and had a, told you so, moment. but I never bothered to take that seriously back then.

I was glad that therapist brought it up and suggested looking into it.

Would I recommend people get a dx? I dunno. That depends on the person. I wanted the dx back then. It was important to me. Now, eh, I wouldn't bother with a dx. The whole process was a stressful nightmare to me That ultimately didn't change anything except give me a label. But back then the validation was importantly to me...I felt the need to know if this is what I had going on, mostly for the purposes of figuring where I should start, if that makes sense. I didn't want to try to learn and use coping techniques for something I didn't have. I've been misdiagnosed before, following through with treatment for something's you don't have can be really damaging. Meh. I guess maybe I would do it again, just damn the dx process sucked and left me in a state of overwhelmed more often than not.

I was diagnosed as a child, but not by referral or due to comorbids (to the best of my knowledge). My parents sought an assessment after watching an episode of Dateline or something similar about Asperger’s syndrome and noticing all the similarities to me.

I was diagnosed with Asperger's at the age of five. My mom suspected I had it after reading about it so my parents took me in to be evaluated. I vaguely remember it but it was a few years later when I was told what had happened.

I got diagnosed because of my school being incompetent and wanting to put me in a behavior class ands ignoring my IEP and my parents. Without them being incompetent, I wouldn't have been diagnosed and I am not sure what would have happened to me as an adult other than having anxiety and ADD and other labels I was given before 6th grade. I also feel my psychiatrist only gave me this diagnoses because of too many labels I had so he put them all together and made it be autism.

First, here in the UK the time it takes from being accepted and getting tested varies compared to which area one lives in the country. London areas are usually the quickest with only a few months wait in some areas, while in other parts of the country years of waiting is often the case. I have been waiting so far for a year and eight months so I have past the half way down the list stage. My area has reduced their waiting significently now that our Welsh Assembly allocated extra funding to deal with mental health issues here in Wales so the waiting lists have come right down to two and a half years when I was first on the list, and then it had come down to just over two years since then.
Unfortunately then covid hit, so I am not sure how that effects things but I do see new members from the UK who join saying they have just been diagnosed, so this means that people are still being assessed. (I dare not ask too much because the assessment people have enough to deal with and are doing an excellent job in very difficult circumstances. I am soo greatful to them for the help they have given me so far).


How did I come to realize that I needed an assessment?

This is quite a long story for me. Where shall I start?
About 2006 or slightly later I was recieving counselling when I was working on the railway. At first I had been puzzled why they had arranged counselling because notmally it was only given to traincrew if they had witnessed a death, and though I once did have a lady die on my on my train, the event was peaceful. Put it this way. It was I that was panicing and not the lady who had died!
But I realized that this counselling was because I happened to once mention feeling suicidal. I said it in a casual way while talking about other things. My trains manager said he thought I was the very last person he would have thought to feel suicidal as I always seemed happy ad cheerful. (Looking back I know why and it is because I was masking, as I could be depressed but on the outside I can appear happy if that makes sense?)
But anyway. I had never been to counselling before, so I decided I may as well give it a go.
These hour long counselling sessions I attended were a kind of welcome break because the lady had me talk about my thoughts and feelings. She was about my Mums age and a very kind lady. At first it was awkward because I did not know what to expect, and then when I was told to talk about what was on my mind, I needed a lot of prompting because I did not really know how, but once I was prompted and started to talk, I could carry on and the lady only had to stop me now and then to ask questions. Most of the time it was me talking exploring my thoughts.
Towards the end of the last of the five or six hour long counselling sessions she told me a summery. One of the things she said was that she thought I was on the autism spectrum and I needed to see my doctor to be assessed. . I kinda ignored that because in the past I had a dentist tell me to book an appointment to see my doctor because I was having an excess of stomach acid which was attacking my teeth and I had done and my doctor back then did not even look and said that dentists don't know what they are talking about. (I have since then changed doctors surgeries). Now how could I ask my doctor to be assessed for autism when I was not dissabled? (I assumed autistic people were physically dissabled). So I ignored it.

But almost all my life from the age of about six, I had been having issues with what I now know to be shutdowns. I never knew what they were in the past and I did not even know what caused them. Mind you, years ago a doctor asked if I was autistic and he asked if I suffer with anxiety or stress and I said no without even realizing back then that I daily experienced anxiety but I was soo used to it that I did not know I had it. (Somehow it is only in recent years I have worked it all out through being on this site!)

But those were just some pointers which I completely ignored (There were many others from my past now looking back), as due to popular missconceptions, I did not know what autism is.

But in around 2007 I hit what I say was my first burnout though looking back I had hit semi burnouts before. But it was the first one of quite a few which hit that had a noticeable effect on me and I did not know what these events were called so I had no hope of trying to explain them to my family let alone trying to explain to doctors! (So I didn't as trying to talk to my old doctors when the doctor allocated me one three minute appointment per year, and then during the appointment the entire time he was looking at his watch and as soon as the three minutes came up he ended the appointment with no help whatsoever.... I did anything I could to only see doctors if I had to. So seeing a doctor was not an option in those days despite my mental health suffering where my brain was "Bouncing" back and fore in time during that time and I upset a work collegue due to this etc).

So with no one I could turn to who I new how to even try to explain things, I just quit the job and looked for a fresh start after I felt able to do so. (The long term knock on effect back then meant poverty and selling my house etc, but my health came first.
Strange to say now, but I did not know it was my mental health that was effected. I could not work it out but to me everything relating to shutdowns were due to "Some sort of allergy" (Another thing where though I had allergy issues, I had been for years sidetracked due to a doctor telling me that the shutdowns were "Some sort of allergy" and each time I had a shutdown my Mums response was "Ignore it and it will go away" or "Don't think about it" which is hard to reply to when one ends up on the floor and is not or hardly able to move.
My natural respons of years of being criticized or told off for having shutdowns was to try to hide the fact that I was having them. I can't blame anyone really ecause they did not know what I was going through and assumed I was either faking them, or I could ignore them somehow, and these events were usually inconvenient in their timing).

But going back to how I really came to work out that I could be on the autism spectrum, and I will be puzzled if I am not (Possible but if I am not I will have LOTS of unansered questions which after a life time of searching have slotted into place if I am)... It really started in the form of a semi desperate prayer

"LORD. What's wrong with me?"

In the years following that prayer I had so many "Pointers"... It reached the stage where so many people which were in many cases complete strangers, or they were people I know of but do not know them directly? (And in one case a person I know but have lost touch with)... That I started to think that someone I know had been going round putting these people up to saying that I was on the autism spectrum as a complete wind up, as once when someone suggested it, I ran outside of the building expecting to see someone laughing away hiding round the corner. I honestly thought it was a prank being played on me as it had happened so often!
Little did I realize that it was God answering prayer!

But two significent things happened as part of that process. The first is someone I know happened to have not replied to my texts for a few months. Turns out it was six months. I did not text him often so I thought nothing of it.
Then one day he rang me asking for me to come down to his house.
It was normal for him to ask me into his gara
ge where he had a cozy back room as he would normally be in his house, but I believe his wife wasn't keen on him smoking in the house, so sometimes he would ask me to come into the garage so we could have a chat.
I enjoyed our chats together.
But this one event had me in a dazed sort of shock because I knew nothing about what had gone on, so you can imagine my not even knowing what to think.... I had better explain.
He had hit crisis in his life and had comitted suicide as he had driven onto the Severn Bridge (UK) and jumped. Someone had seen him jump and xalled in the eergency services and they retrieved his body from either over 100 feet or 100 metres under the water as they sent divers down from a rescue helicopter who had managed to get to them. (If you have crossed the Severn Bridge you will realize that the water there (The sea) is deep. The suspension bridge itself is high up above the water.

He had woken up in hospital after being in a coma for around six months, and in his stay in hospital he had been assessed and declared as a high functioning autistic. (If you are the person I am talking about please get in touch as I lost your phone number as it was on my old phone).
He said that his wife was leaving him as she could not cope, and he had a lady with him in the garage which he introduced as his girlfriend and was his carer (Social worker?). (I later found out that he was joking that she was his girlfriend. I did not know what to believe at the time as it was all soo sudden!).
He then said that I will be seeing a lot of that lady as I was on the autism spectrum as well.
When he said that to me, the day had been soo surreal I could not take it in. I said something along the lines of a polite way of saying "Ok. It is time for me to go now!" as I honestly thought he was nuts but now I realize he was likely to be spot on. (It was all too much to take in on that day as it was all such a shock).


Another event was just as unusual as roughly during that time I was dating via text and online (And I met her and her son several times) a beautifully hearted lady who was on the spectrum. I knew nothing about autism. She was diagnosed with aspergers syndrome after her son had been diagnosed with autism. She was my second girlfriend and I was around 42 and she was 43 if I remember correctly at the time.
When we met, I asked her what aspergers was and how it effected her as I wanted to know because I was dating her.
It was odd because she started to try to explain, but everything she said apart from two smaller things were things that I could not fathom were anything different to me. You see I assumed I was "Normal" (My way of describing NT though I did not know any of these terms back then. I need to explain something here. I have had quite an unusual upbringing so my tendency to be different and a bit of a loner I assumed to be because of my different upbringing, and I knew nothing about the connection between Autisn and thinking in different ways. I thought autism was something that dissables peoples bodies because when I saw autism mentioned in the news, it was always someone who was severly dissabled in a physical way or had, or seemed to have a very low IQ. (It is wierd as somehow when I met people who were severly dissabled in this way I could connect with them more then I could connect with an "Ordinary" person but I just could not explain it or fathom it out, but I knew somehow there was a significence? I can't explain. I nearly always held them in respect as when I saw others making fun of them, it was as if they were making fun of me? Even though I usually have full use of my body (Except while in a shutdown), so I had been puzzled)).

Going back to this lady I was dating. She was getting frustrated when she was trying to explain and I was saying "But I do that. It is normal isn't it?"
To kinda diffuse her frustration and add a little humour I said half joking "Do you think I am on the soectrum as well?"
Uhmm. She had me sit one of those online autism tests, and even though I put "No" to some questions that I now know I should have answered "Yes" to as I did not know what these technical terms meant, I still had a result that said "See your doctor or physician".
This was on the back of my mind as by then I had changed my doctors surgery and it was like changing from a third world service into the modern world service. So I thought "Next time they call me in I will ask". They called me in every few months back then to check my blood pressure.
Anyway. It took me two whole years to ask if I was on the spectrum as each time I tried I was getting mindblank so I could not ask.
Eventually I happened to be researching prosopragnosia on youtube. I did a mad three days of watching every single video on there which was on the subject. One was "Ask an Autistic". I was soo annoyed with myself because I could not ask my doctor that I did not want to know. This video kept popping up again and again.
Eventually, on the third day I had watched every single prosopragnosia video on there except this one, and finally I clicked on the link. Well I was amazed. Astounded about what the lady said. How she said that most people with prosopragnosia were also on the autism spectrum. I then went on a binge watching all the "Ask an Autistic" videos...
BUT I was then determined to ask my doctor. I wanted a yes or no answer! Due to mindblank issues, I asked my Mother to come in with me and told her what I needed to ask so though my Mum did not think I was on the spectrum (She also had pre-concieved ideas as to what autism is), she did speak up when I did hit mindblank, and to cut a long story short, I find myself on the list to be assessed.

And because I did not know if I had done the right thing or not, I joined this site to try to find out sooner what the issues I was having are, because somehow I saw a connection with meltdowns. I had not even heard of shutdowns.
But on joining this site some of you tallented people pointed me in the right direction and Save Ferris gave me a link (Which I have on my signature as a button to press), part of which describes my shutdown experience soo well and accurately, that I scrolled all the way back up to check who had written it, as I thought I was reading what I had previously wrote!

I seem to be in the small minority of females with Asperger's born in the 90s who has actually gotten an official diagnosis in childhood. It baffles me how I didn't slip through the net like 99% of other females with Asperger's (mild HFA) who grew up in the 1990s/2000s when Asperger's was known about. It sometimes angers me because I'm supposed to only be mild, I am not severe, so therefore I should have slipped through the cracks like other Aspie females my age.

Question. Do you get meltdowns or shutdowns? If you do could someone have picked up on this?