Assessed after joining the forum? Were the results expected?

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Those who like me have joined to find answers and were later assessed. When you had the results, were they what you expected them to be or was it very unexpected? What was the test like?

The tests were carried out over 4 sessions, each about 3 hrs long. The Doctors were lovely.
The tests were, at times, hard. I kept an open mind about the results but I'm glad to say that I received a diagnosis.

I didn’t join until after I was diagnosed but I regularly read forum posts for a while before that.

I could relate to so much of what I had read that I wasn’t at all surprised when I got the diagnosis.

My neuropsychological evaluation was around 5 hours long, and it was spaced out over a couple of sessions. There was an IQ test, a long personality test, an interview, and the ADOS (among other things). Don’t read up on it. You aren’t supposed to prepare for it in any way.

I am glad I am not supposed to prepare and that you have said that. I take it I don't prepare incase my mind clicks in and would alter the results? Ok... Thanks for that information. It is just what I need to know.

The only thing I may do is write any possible symptoms? Or would this not be needed?

Yes! Writing a list of symptoms and things you remember from childhood is a great idea.

If you know what’s in the test, you could mentally prepare for it without meaning to which could potentially skew your results.

The results were not what I expected , I didn't think I had ASD ( or more factually , I changed my mind on a weekly basis about the possibility ) and even made a bet with a member , I said I would get a Ferret tattoo if I had ASD.

It wasn't unexpected that I'm on the autism spectrum somewhere; internet forums were recommended to me by the counsellor who first suggested it as an explanation for my persistent mental health problems. However, I had assumed that I must be a "borderline case" with only very mild traits, which turned out to be wrong on several counts, in particular; sensory and executive functioning problems; realising that many of my "panic attacks" were really melt-downs and shut-downs; and that my constant exhaustion was due largely to masking and burning-out, not just insomnia.

I think there are several reasons for my surprise, not least of which was that I believed so many of the misconceptions that people have about what autism is. Also, just the fact that I'd known my traits from infancy, so had no "bar" to measure them by - I assumed that everyone else in the world was "masking" similar issues to my own all the time and, in a sense, deceived myself with my masking every bit as much as everyone else. I knew that I was somehow different from my peers from primary school age, but had always just put it down to being "a weakling", "unmotivated", "too introverted", etc. (well, why not? I'd had enough people telling me those things over and over again all my life.)

I was nervous about the assessment at first, but once I got into it, I found it really refreshing to talk to someone who understood my thoughts without just giving me funny looks about the "weird" stuff. It was done over four sessions of about an hour or so, mostly with a psychologist specialising in neuro-developmental conditions, and partly with an occupational therapist. It was generally quite a relaxed atmosphere, and it never felt like an interrogation. During the course of it, various phrases that I'd first seen on WP were brought up regularly by the assessors; "executive function", "sensory hypersensitivity", "stimming", "masking", etc., which confirmed to me that things I'd identified with here weren't just confirmation bias or hypochondria. My only disappointment was the lack of follow-up support - but that seems to be par for the course for Aspie adults pretty much everywhere (the waiting list just to be assessed is now nearly three years where I live!)

Last edited by Trogluddite on 22 May 2019, 8:18 am, edited 1 time in total.

I joined while on the waitlist for assessment.

The testing was about 12 - 15 hours.

My results weren't as expected because I assumed I was HFA, but I was assessed more in line with moderate (L2). I was shocked because I've led a very independent life, lived alone since age 18, had a career, etc. I spent my life masking a lot of struggle and exhaustion.

I was pretty convinced by the time I got round to my assessment that I was on the spectrum, but I was still pretty anxious about the result and which way the assessors opinion would go. He didn't give me any clues, so when he sent me off to sit in a waiting room whilst he came to his final decision, that was pretty nerve wracking and I ended up not really knowing how to respond when he did give me a diagnosis (didn't really sink in until I got outside after and then it felt good).

Assessment took two sessions of about 90 mins each. The first one was doing the ADOS, and I know a lot of people caution against knowing too much about it, but I needed to know what was going to happen, so I knew what it involved in terms of tasks and had a vague idea of some of the things they might be looking for. But that didn't actually help me, I actually found it quite hard and confusing regardless (unfamiliar situation I think really highlighted how much I'm used to bluffing my way through things the rest of the time, despite not really understanding everything well). The second session we went over sensory sensitivities and routines etc, then I got the result at the end and a report a few weeks later.

Thank you so much for all your replies. Most appreciated.

I veered between thinking I wasn't on the spectrum , and thinking I'd get an atypical autism diagnosis. The latter was because of thinking I didn't meet the full criteria , and the lack of info about my very early years.

I would assume most undiagnosed autistics who join the forum suspect they are autistic thus are not totally surprised by their ASD diagnosis.

At least you only had to go to a waiting room for a while. I had to wait five weeks for the "feedback appointment," at which the test results were discussed and I was told the diagnosis.

Then again, I got tested the relatively inexpensive way by an "extern" working under a degreed psychologist, rather than by the degreed psychologist herself.

Anyhow, to answer the original question, the results were not a surprise, but were indeed a huge relief.

I previously knew that I have a lot of autistic traits, but I wasn't sure whether I would be deemed to be within the current diagnostic thresholds. I felt that I SHOULD be, since I felt that I must be at least as autistic, in many ways, as my boyfriend (who was diagnosed with Asperger's in 2001), and that I must be at least as autistic as some of the already-diagnosed folks I met at the in-person support groups here in NYC. But I had no way of knowing what the diagnostic thresholds might currently be deemed to be.

Indeed you should not try to prepare for the tests themselves, but there are two things you should do to prepare for the assessment:

1) Dig up as much info as you can about your childhood, especially your early childhood, including the age at which you reached various milestones. If your parents are no longer living or not cooperating, try to contact other relatives and/or other people who knew you as a child. If possible, obtain written statements from these people about any unusual behavior patterns of yours that they observed when you were little. If you were in special ed or there was anything else unusual about your school history that might be relevant, obtain school records if you can. (Note: Not all autistic kids need special ed; some do very well in school academically at least, despite social difficulties.)

2) Make an organized list of your autistic traits and any other specific psychological difficulties of yours that you are aware of. I would suggest lists of traits in the following categories:
- social difficulties, including but not limited to any difficulties you have that seem like they should fit the diagnostic criteria, part A.
- sensory sensitivities and other sensory oddities.
- attention difficulties (e.g. any greater-than-normal difficulties with multi-tasking, shifting attention from one task to another, and/or ignoring distractions) and the ways that such difficulties have impacted your life.
- other executive functioning difficulties, including any unusual difficulties coping with change.
- unusual habits and routines.
- miscellaneous difficulties, of whatever kind, that affect your ability to function in daily life.
- non-problematic additional reasons to suspect autism, e.g. unusually intense interests, unusual skills.

Thanks. That is good advice. Only small issues I have. Relatives have all died off or scattered. Only my mum is left and a few cousins, and the cousins are a bit distant. (As in only one keeps in touch. Most don't want to know). They asked for one person, so my mum knows me best.
Before school days I was an early developer. I said three words very plainly at the age of about 6 months old my mum said. Though I then kept quiet until average speaking age. I actually remember saying them.
Generally in school I was shy and withdrawn. School reports (I don't think we still have any) often quoted me as quiet and a day dreamer. I was ever so clingy to my mother. My mother is a free thinker and so am I. (See the clip in the film section to understand what I mean. Though my mum and my aunt (Her sister) were not as extreme as the lady in the film, it is the kind of thing I can relate to. The "Not doing what other families did" type of thing, like deciding to get up and go for a walk down to the beach and back at midnight, or if I was a little off colour and needed a de-stress time she would not take me to school and instead would take me to the beach or somewhere for a walk to refresh. I really really loved those times as I know I needed them. It wasn't often. Prehaps once a year and only when I was young. But they made such a difference. Aunt Silvie in the film reminds me of my mums sister a little more directly then my mum, though she wasn't quite that bad! She was sensible with it.

And...obvious question...did you get the tattoo?