Adult ASD: Waiting for a Diagnosis

This is Part 10 in the I Think I Might Be Autistic series. 

If you’ve read through the components of my ASD evaluation, you might be wondering but what about the Asperger’s questionnaire?

There wasn’t one. I didn’t complete a written screening or diagnostic test like the RAADS-R or AQ. My ASD diagnosis was based on the diagnostic interview, the outcomes of the cognitive/neuropsychological testing and behavioral observations made by Dr. H and B during my visit.

However, between the diagnostic interview and the behavioral observation, the key questions on the screening instruments were addressed in detail. The diagnostic interview covered questions on my special interests, relationships, social preferences, sensory sensitivities, attention, language pragmatics and fine motor skills. The behavioral observation included general presentation (grooming and dress), gait, speech (rhythm, rate and volume), demeanor, verbal skills, eye contact, movement patterns and conversation habits.

The interview and testing took about five and half hours. It was exhausting. We went straight through lunch, though both B and Dr. H told me that I could ask for a break at any time. The thing is, when I’m that engaged in something, I forget that I need to eat. I may be hungry, but the hunger signal gets muted.

So, exhausted and hungry, wishing I’d taken The Scientist up on his offer of a ride, I scheduled my follow-up appointment and stumbled out to the car. My evaluation was done. In three weeks I’d have a diagnosis.

Or not.

A vague sense of panic settled in as I started rehashing every detail of the appointment. Worse, I knew that I had three weeks ahead of me to perseverate on what I’d said and done and not said and not done. Three weeks to wonder if I’d done “too well” on the cognitive tests, if I’d instinctively made an effort to “pass” in the interview, if I’d withheld key details or reflexively covered my weaknesses.

Three whole weeks to alternately tell myself that this had been the best and the worst thing I’d ever done for myself.

The days passed about as quickly as you’d expect. I was restless and unsettled, plagued by a string of nightmares. The idea that Asperger’s might be something I’d talked myself into or imagined haunted me. My biggest fear–the one I couldn’t shake–was that Dr. H would tell me I wasn’t autistic, that in fact there was nothing wrong with me.

Then what? I’d found this explanation that fit so well. If someone “officially” took it away from me, I would be lost again, left to start over in search of a new, better explanation.

Next up: The Follow-up Appointment – Receiving a Diagnosis

21 thoughts on “Adult ASD: Waiting for a Diagnosis”

  1. I really feel for you having to wait 3 weeks for the results! I’m lucky enough that I was a clear enough case to be diagnosed at the end of the assessment, especially as in the end it took 7 weeks to see their justification for the diagnosis (the 9 page assessment report), so I’m VERY glad I didn’t have to wait that long! I’m sure that I’d have tortured myself and probably harassed the poor friend who’d attended my assessment if I hadn’t got an immediate answer.

    I can really understand all the worrying and second guessing about whether you’d made an unconscious effort to ‘pass’ the tests. I think one of the hugest benefits to my Asperger Service’s policy of asking you to bring a family member, partner or long term friend with you for the assessment is that afterwards you have the immediate and ongoing support of someone who was there with you. They can tell you that you *were* being yourself and that nothing you said had been a misrepresentation. You can also look through your report later and remember how many of the things the assessor wrote down from your interview were actually coming from someone else who knows you well, not directly from you.

    In my case I had prepared myself for weeks of wait before I heard anything as one of my friends who was diagnosed by the same service had to wait several weeks before the assessors decided if they could justify a diagnosis. For me, after the interview was over, there was a brief pause while the two assessors compared notes and then the psychologist came back and told me they were happy to be able to diagnose me with Asperger’s Syndrome. Amusingly my immediate response to being told that I was being diagnosed was to tell them more things I’d thought of while they were out of the room that I hadn’t mentioned before and that it was *really important* for them to write down as evidence! I think this shows how difficult it is for me to quickly ‘change modes’ when the situation changes 🙂

    Ironically I think that by preparing myself for the likelihood that I wasn’t going to find out anything on the day, I ended up poorly prepared to deal with suddenly having a clear diagnosis without any time to process how the assessment itself had actually gone. I was in a bit of a state of shock afterwards and spent hours talking through the same things over and over with the friend who’d attended with me. Then I had roughly a week or two of euphoria at finally knowing why I was different, before something of an emotional come down as I started to question decisions I’d made and identities I’d adopted in adult life, and mourned opportunities and friendships that were maybe lost because I hadn’t known this about myself.

    I think what you’ve written previously about needing to produce a ‘sense making narrative’ in response to diagnosis is absolutely spot on and I think reading books, websites and blogs like this one can be a really important part of processing and understanding the transition from ‘maybe this is what’s going on with me’ to ‘I’m autistic, it’s official’. I’m currently reading Asperger’s From The Inside Out and that entire book seems to be a ‘what next?’ guide on what to do after the process of diagnosis.

    1. I too was diagnosed on the spot, and struggled to switch. I kept sending texts to my friend saying things like “diagnosis ahhhh!” and “I AM DIAGNOSED WITH AUTISMNESS” and I was really glad my mum was there to help me do proper lifey things like buy us pizza while I was all ahhhhhh.

      I am finding this series of posts really interesting and valuable. I think I need to read Asperger’s From The Inside Out, next.

      Thank you both for sharing. I am very grateful.

      1. Glad you’re enjoying the series! I had no idea it would turn out to be as long as it is. 🙂

        I highly recommend Asperger’s From The Inside Out. It’s a great general read and addresses some of the questions that come up as you move forward with a diagnosis.

    2. I was told from the start that I wouldn’t receive a diagnosis until the follow-up appointment. In part, I think this is because I was being evaluated for AS, ADHD and SAD so they wanted to be able to look at all of the data before making a diagnosis. One thing that just now occurs to me is that as he described the battery of cognitive tests he’d be requesting, the neuropysch said that he wanted to look at ADHD and SAD because they often co-occur with AS. So perhaps he’d already made up his mind about the AS? Hard to say.

      That’s so funny that you went on telling them about more things. I actually sent off an email the night of my assessment, describing some emotional dysfunction issues that I wasn’t sure we’d covered thoroughly enough in the diagnostic interview. Then I had to stop myself from sending any more emails as I thought of more stuff.

      “Asperger’s From The Inside Out” is one of the first books I read about AS. I like JMC’s writing style–he’s reassuring but frank.

      1. I confess that I started reading the book because I saw you’d recommended it. I’m enjoying reading the perspective of someone who’s on the spectrum but so successful in life, it’s unusual compared to the other perspectives I read. The book’s well written, insightful and useful so far, however I’m surprised by how many odd idioms he uses in the book. I usually find writing by and for people on the spectrum refreshingly clear and direct, but his writing style tends towards unexplained idioms (most recently in where I’m up to advice of letting things roll off your back – which made me visualise the angle I’d have to bend to be able to do that in a satisfying way!). I feel like it would have benefited from being also edited by someone on the spectrum.

        1. I think MJC’s book was the first I’d read where the author took more of a positive rather than a deficit-based approach, which is one of the reasons its on my resource list. I was getting really tired of reading all of the ways in which my life would likely be a complete mess because ASD. His experiences were refreshing in that sense.

          I don’t remember being bothered by the idioms but it may also be in part a US vs. UK English thing? I’ve read a bunch of books by UK authors and notice subtle (and sometimes not so subtle!) differences in language usage.

  2. While I have a childhood diagnosis, there is currently a push to get something more current and while I know rationally I pretty well could be the poster person for adult ASD I suppose part of me has the same fear. I submitted to a re-evaluation about 14 years ago and it was so exhausting I didn’t get through the process so the perosn wouldn’t do more than verbally confirm with my doctor that I fit. It seems even if she had said as much on paper they would still want something newer to qualify me for any “perks ” that go with it. It seems a double edged sword though as I have seen cases where clinicians undervalue an adult diagnosis anyway so part of me wonders about how wise this is while acknowledging it’s impossible for me to get services that take my autism into account well enough based on a diagnosis that is 4 decades old.

    In the end it is just a label I guess and rationally I know I am in no danger of anyone saying I am normal but fear is seldom rational.

    1. I’ve wondered about the possibility of needing to get re-diagnosed in adulthood. It sounds like a difficult maze to navigate, especially if you’re feeling pressured to complete a re-evaluation to access services.

      I get what you mean about some people being suspicious of an adult diagnosis. It seems that some clinicians don’t really believe in the existence of adult autism or assume that if you’ve made it too adulthood undiagnosed that you can really be autistic.

  3. Well we went throught it 15 or so years ago because I was being treated by a psychiatrist who had essentially spent years choosing to treat me as having a Dissociative identity disorder (who’s alters were all autistic isn’t that odd…) and ignoring what my family doctor said to him about what if he considered the autism to be primary. The evaluation I did not finish was enough at the time to finally get him to think about me in purely autistic terms. I was miraculously integretated on the spot and closed a too long chapter of my life. This time around it is more because the services we can access any other way don’t take my autism into account and mostly cause more stress than they are worth. Oddly enough in my city there are some “perks” that seem to be offered to the autistic population that are not extended to other disabilities and I am working on finding out why that is as that seems questionable from a legal stand point but the need for appopiate services is driving this. I do not get why they can’t take the childhood diagnosis and it not being curable at face value but I do to some degree understand a desire to get an understanding of what my issues are like now.

    I am in Canada so there is no finanicial pressure involved at least but children are a priority for disagnosis so it could be a long wait all the same. It seems a little perverse to want an up to date one for services and not be able to provide a speedy route to it when no one is disputing you need that help but that’s the nature of the beast.

    Long term I don’t have a choice. The services I have now without one are stop gap and completely and consistently fail to take my autism into account so demand things of me that I cannot do. It’s not fair to myself or the service providers.

    1. It’s so strange that autism is routinely described as a pervasive developmental disorder and we’re required to get “re-certified” if too much time has passed since a diagnosis. It does make sense that service providers would benefit from having an updated profile of what sort of services you’d benefit from, but perhaps that could be done in an interview with you or something less demanding.

      I hope that you’re able to get the required assessment done so you can access proper services. There are so many hurdles to jump through.

  4. I waited a year for an appointment for diagnosis. My doctor told me she had referred me, to the mental health team. They told me she had not and that there would be a long wait… as they had to employ someone to make the diagnosis…

    I complained and suddenly someone was employed to do it. there were 3 sessions.
    The diagnosis was a relief but there are no services for adults here.

    I am in the UK.

    1. Interesting that once you complained someone who could diagnose you materialized. It’s frustrating how aggressively we have to advocate for ourselves sometimes.

      There isn’t a lot in the way of services for adults here either, though a diagnosis does qualify someone for accommodations under the Americans with Disabilities Act, which can be important for those who are working/seeking work or going to school.

  5. First of all, I’d like to thank you for this wonderful blog. I’ve been lurking for a while now, systematically reading all your blog entries from the beginning up to this point, and I’ve enjoyed reading both the entries and reader’s comments. I find them informative, helpful and above all, validating.

    I know that this is rather an old post, but I feel compelled to write here to talk a bit about my experience of being diagnosed. I was diagnosed in the UK with Asperger’s in 2012 at the age of 41. Although my self-diagnosis, and later official diagnosis have had a positive impact on my life, I still have quite a few doubts and unanswered questions regarding the diagnostic procedure, because it was slightly different to those described by other readers. Getting a diagnosis on the NHS can be difficult and take a long time, so I chose to pay for a private diagnosis. I was given no pre-evaluation, no questionnaire to fill in and the psychiatrist who would diagnose me had very little information to go on other than what he had learnt from the GP who referred me. I was given a diagnostic interview which lasted just under one and a half hours, which appeared to follow the procedures laid out by NICE, other than the fact that I was assessed by an individual, not a team. My mum attended the interview and was able to confirm my symptoms and answer some questions about my childhood characteristics. I was expecting to be given some form of cognitive tests such as those described by other readers here, but I was given none. At the end of the interview, the psychiatrist informed me of his opinion, and I was diagnosed with Depression and AS. A three page report came in the post a couple of weeks later with the official diagnosis.

    As mentioned earlier, the way the diagnosis was conducted has raised a lot of questions in my mind. Why wasn’t I given any cognitive testing? How could the psychiatrist be so sure of my diagnosis? I was extremely anxious at the interview, and I’m sure I must have displayed quite a few autistic traits, but even so, is this enough, wouldn’t he have to observe me for longer and conduct further tests to be sure? The psychiatrist appeared to be very professional and highly qualified, but I have no idea how much experience he has in diagnosisng ASD. I was wondering if anyone else had been evaluated in this manner?

    At about the same time, I made a further discovery about myself, which has its origins in psychotherapy I had received back in 1991 when I was a student. I had been going through a phase of extreme anxiety, depression and self-loathing, and when I’m under stress, I have the tendency to enforce a rigid regime of behaviour upon myself. I became strict and obsessive about my meals, and as I didn’t like to use the buses, I walked one hour onto campus every day, the result of which was that I had become dangerously thin. I did not see this, but my family did, so they insisted that I visit the GP under the suspicion of anorexia. I was sure that my problems weren’t due to anorexia, but excessive anxiety, which I had had since high school but hadn’t become really critical until I moved off campus. The doctor didn’t think I had anorexia, but agreed with my parents that I needed help. So I was referred to a psychiatrist affiliated to the university where I was studying. The GP simply wrote on the referral note “X needs to find herself”. I was given a series of 10 sessions with the psychiatrist, in which I talked about my anxiety around people, the feeling of alienation, detachment, being different to my peers, being rejected because I was different and my lack of self-confidence. I told him about being teased and bullied at school and by my older sister, and my constant worrying about not knowing what people think of me and my fear of rejection. It was established that my sister was the root cause of my anxiety, and I needed to reconcile with her. I never attended the final session with the psychiatrist, which I later regretted. The psychiatrist neither discussed a diagnosis with me, nor prescribed me any medication. In time I forgot all about the therapy and the psychiatrist.

    Then, in 2012, I made two discoveries. Firstly, I learnt that the psychiatrist who saw me in 1991 was actually a leading ASD specialist in the UK and was actually researching a book at the time on AS in adults. Secondly, I was visiting my GP one day when something on the computer screen caught my eye: “Social Phobia”. I asked the GP about this, and she said that this was from the psychiatrist in 1991. He had diagnosed me with Social Phobia without discussing any such issue with me. In fact, there was no mention of any diagnosis of any kind, neither Depression, Social Phobia nor Anorexia. My emotions on learning that went through shock, upset, anger… why hadn’t he said anything to me? Since he was an AS specialist, surely he must have seen some signs? Had he suspected that I had AS, but witheld it from me? Not that I could have received such a diagnosis in 1991 anyway. Perhaps I had masked my traits too well, and he didn’t think I had AS? I was trying to appear as normal as possible, and could have supressed or hidden a lot of traits. Or maybe he realised I had AS traits, but didn’t wish to mention them to me, thinking that such a thing wouldn’t be beneficial to me at that time of my life. Perhaps he wasn’t familiar with traits in females? Or perhaps he wasn’t looking for them anyway… any thoughts on this? I will probably never get an answer to these questions, but the seeds of doubt keep niggling away in my mind and cause me a lot of anxiety.

    I hope I haven’t overwhelmed you with the length of this and all the questions. Thanks for reading.

    1. There are different ways of diagnosing AS and the diagnostic interview is probably the most reliable method in adults. Questionnaires and cognitive testing can help support a diagnosis but ultimately it’s a judgment call made by the clinician.

      As for why you didn’t receive a diagnosis from the expert you saw, one reason might be that Aspergers didn’t become a formal diagnosis until 1994. Another could be that the”expert”didn’t treat you like a competent adult. All of the other possibilities you mention make sense too. It’s impossible to say really.

      Much of what you describe about yourself and your history points to spectrum traits so perhaps the psychiatrist who interviewed you was able to develop a clear picture from what you felt was a relatively short encounter. Have you had any chance to make follow-up appointments to talk with someone about your depression (if you think that dx is accurate) and anxiety?

      1. Thanks for your reply. I was very tempted to reply to many of your posts, but didn’t want to overwhelm you with a whole bunch of comments at once – but I may well come back to a couple of these older posts later 🙂

        Yes, I think that the psychiatrist who diagnosed me made a judgement based on gut feeling, and his questions were to confirm the diagnosis and rule out any other possible explanations. He seemed to give a lot of weight to the fact that my mum had read about AS and believed that I had it. I also made no effort to hide more obvious traits such as stimming. I suppose that if he had had doubt in his mind about the diagnosis, he could have called me back for testing. I think the diagnosis of depression (Major Depressive Episode) was correct, because I’d been going through a particularly difficult time after losing one job and not being able to cope with a new one in the space of 4 months. I didn’t have any follow-up appointments with the psychiatrist, but took medication for depression and anxiety for about a year afterwards, and tried CBT for a while.

        My GP told me that I was probably given the diagnosis in 1991 of Social Phobia in the absence of the possibility of an AS diagnosis. I also learned that I’d been suspected with Autism as a child by a remedial teacher I had for maths and taken to the doctor, who announced that I couldn’t possibly be autistic because I could talk and answer his questions. Anyway, I’m happy with the diagnosis that I eventually received, and that I’ve now found an explanation for the difficulties I’ve had throughout my life.

  6. I am waiting for my next appointment when I will take the cognitive testing, I am also concerned that I won’t be diagnosed properly, or that I will be told ” there’s nothing wrong with me ” I know that there is SOMETHING wrong, and I can sit here for hours reading the writings of Aspies and others on the spectrum and go “wow, I know that feeling,” or “hey, I do that…” Things that I never thought about, or have to think about for a moment before I see that I have been there in the past. I stim, I have odd tics, I have meltdown with all the classic symptoms-and human interaction is a freaking mystery to me. I can run down any list of traits, symptoms and diagnostic criteria and just about every thing on it does or has at one time applied to me in various degrees
    Why else do I have sensory sensitivity, severe social anxiety, official diagnosis of OCD ADHD and depression, as well as contastly losing jobs that I actually care about and want to keep but get fired because I break down and throw a fit like a child, or worse- start breaking crap and slamming my head against the wall.
    Why pull the rug out from under me?
    I am smart, genius level smart, but by gods if I don’t act like a frickin’ caveman sometimes.
    I don’t WANT to be a jerk- but when I lose it, all logic leaves the building.
    Lately I have been so stressed out, unable to replace my last job and with no backup funds I am going to have to back step into the most damaging environment that I have ever been in (I was abused by my dad as a child.) Unless I can find a job, or get some kind of benefits.
    -this is quickly becoming a rant, I should probably conclude it and move on.
    I mean, I won’t be devastated to discover that I am not Autistic- so long as they can tell me what the hell is wrong with me! I am tired of stumbling around in the dark stubbing my toes and tripping over the figurative obstacles in life.
    Having a word for my condition would give me great relief in simply knowing what I have been through is not something made up (my family seems to think that my OCD and depression are not real- despite having been evaluated by a psychologist and officially diagnosed) I don’t want to be a broken human, but the truth is that I am- it took me years to fully understand and accept that fact. My family still wants to ignore the facts-even when someone spells it out for them.
    I am a human being, despite how alien I feel- all I want is answers and the freedom to live my life.
    I just want to be me- who ever that is, and however I choose to express myself and whatever kind of mental or physical disability I have- I just want to be me.

  7. I’m in the process of obtaining an official diagnoses. Had the interview, the tests and questionnaires. Now I’m waiting for the final verdict. I must admit that I’m scared stiff that I may not be on the spectrum after all. That would mean that there really is no excuse for my social inaptness and that I should try even harder then I already do. I talked about this with my husband, but he did not seem to see the problem with this.

    It’s making me feel exhausted even thinking about the possibility.

  8. I am going over my test results tomorrow! Hopefully (pleasepleaseplease) I can get my childhood ADHD rediagnosed. I really felt a lot like you during the tests. I only had one mistake during the extended performance test – I was stimming so hard that I hit the clicker they gave me unintentionally. In hindsight I was really defensive during the interview. Do you have friends? Yeah!.. Lists names of people I haven’t talked to in months. .. Oh wait, those are just people I know. My questionnaire was answered on a separate piece of paper so I couldn’t write notes on everything either. Disappointing. Hopefully I still get an accurate result. Wish me luck!

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