Questions about diagnostic interviews.

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Good afternoon,

I am a newling here and as much as I hate the word, and the thought of it!, I am in need of some peer support from you.

I would be interested in hearing what diagnostic interviews are like. Despite of much evidence and details pointing towards an AS diagnosis, I dread these upcoming interviews. What will she ask? What must I answer? What if I say something wrong and one simple detail ruins the long process up to this point? I live outside the US, not even in the UK, and I know for a fact that female Asperger's is not a well known condition over here.

Any insight, tips and experiences are warmly welcome.

My lengthy road towards a diagnosis began last spring. It has been a long ride, but surprisingly smooth, the greatest hurdle so far has been simply time, and waiting for what seems to be forever, and moving from one doctor and clinic to another, having to go through the same delicate details and embarrassing qualities over and over again.

Last week I finally met with the specialist, who will have appointments with me over the next few months and interview me about the diagnosis. My habitual assertiveness crumbles at the mere thought of what is ahead of me.

So, I beseech you - deliver me from this suspicion and distrust.

Hello and welcome!

(EDIT - I wrote something different earlier, but just realized I completely failed to answer your question!)

In terms of what kind of questions they ask, it's usually pretty straightforward, and not horribly invasive or traumatizing. Just be yourself, answer truthfully, and if you get nervous or confused, that's okay.

If you worry that a certain question is a 'trick question' and your answer might skew the results the wrong way, you can ask for clarification, and explain why you answered the way you did.

One question that confused me was "If you're at a party, and you see people talking together, do you think they're talking about you?" It was supposed to rule out paranoia as a symptom, but I just got confused and said "I don't go to parties, so that's never actually happened to me." And she laughed because it was a stereotypically autistic answer to that question.

Good luck - I hope the process goes smoothly for you!

Hello LarryDoe

I am in the UK and I had my diagnosis in january, and the process was long but as Ashariel says it is quite straightforward. My diagnosis was done with the DSM-V, by a clinical psychologist and a speech therapist, both women and both very lovely.

The longest part of the process was going over the details of my growing up and my developmental stages. Me and my mother were asked if my birth was as expected, and whether my "milestones" (speech, movement etc.) were as expected. We went over my family history and other family members diagnosed/suspected of ASD. We moved on things like school, my history with peer relationships growing up, my family relationships, my interests and hobbies and obsessions, my mental health history, my work history and so on. Essentially, my whole life! This was very straightforward but lengthy. It may be tiring so you should ask for a break if you need one.

After this I had my "practical" tests in which I was made to do various activities to "see how my brain worked"... I was very bad at these but my specialists were so nice that I did not feel silly or stupid. These may be really hard for some people as they are not designed to be easy for autistic people, of course. You can tell your specialist if they are making you very upset - my diagnostic team were very keen for me to communicate (as best I could) what my specific troubles with the practical tests were.

After this I had my "autism" interview, in which we used the ADOS-2 and went over some more questions that were quite hard to answer, but you must remember that it is not a "fail" or "pass" thing - there is no wrong answer, they just want to hear from you in the most honest way. I had questions like, "what makes you happy, and how do you express your happiness" and "do you feel lonely" as example questions.

My best advice is that it's okay to be nervous, and if you're so very worried that it may impact your interview then you could try telling your specialist that this is the case. Your specialist is not your enemy - it is okay, they are there to help you. They should go to lengths to make you feel relaxed and okay about the process too.

I hope this helps a little bit. I hope your tests go well for you and you achieve some peace of mind

I agree with other posters, you should not worry overly much about the process. But if you do, make sure you tell that to the interviewer.

One thing that is often overlooked is that it can be depressing to talk about everything that has ever bothered you, ever, in your entire life. You may even come to realize that some of your memories are much more damning than even you knew. E.g., you realize that someone was actually mocking you and you thought they were being nice, until you see it in a different light.

It's ok to say to the interviewer that you don't enjoy talking about these things. The interviewer has heard that before, and they should sympathize. But they still need you to discuss them, if you really want a "true" diagnosis. ("True" in quotation marks because there is no absolute truth in psychiatry.)

Many thanks to all of you, Ashariel, oldbarn and BeaArthur. I appreciate every bit of information and encouragement you gave me. May others find solace in your counsel, too.


Ashariel mentioned those "trick questions" and the possibility my answer might skew the results the wrong way. That is one of my greatest fears - my life is built on striving to act as others do, and answers questions the way I am expected to answer, to appear normal. At times, I do not know what my real opinion is, I only know what I am supposed to think, based on what I have heard others say.

(Oh, and I love that typical autistic answer you gave them, "I don't go to parties". )


oldbarn - Interesting to read about the DSM-V in the UK. Overall, you described the process in detail, and it appears that it was a decent experience to you. You are lucky to have such understanding professionals! May I ask, why was there a speech therapist? Is that common? How did you feel during the tests? What did they have you do?

As far as I know, we only have diagnostic interviews, no practical tests. Relief! I have always hated doing something when people watch me. Maybe it's due to subconscious insecurity knowing that I am not like others?

Also, thanks for mentioning the interviews are not "fail" or "pass". That's how it should be, but I am awfully wary when it comes to telling them anything - I have heard that they are rather strict on the clinic and they can discard a patient if they deem she is not typically autistic enough - which is a problem, as the typical Aspie is a male, and the diagnostic criteria is based on that, as well as doctors' knowledge.

Another grave concern I have is the doctor - she is a young woman, who seems to have very little experience on Asperger's syndrome. What say you - does that increase or decrease my chances to be taken seriously?


BeaArthur - "One thing that is often overlooked is that it can be depressing to talk about everything that has ever bothered you, ever, in your entire life" - I am glad you put that in words! That is exactly how I feel and I am vastly aggrieved to say that my meticulously voiced discomfort has been ignored so far, by several doctors. I am not looking for sympathy from the doctors, rather professional skills to make me more at ease when having to empty my heart of all these past and present troubles. It seems to me that, to this day, all of my doctors, have more or less forced me to give more than I emotionally can. I understand that a patient needs to co-operate to get a diagnosis and treatment, but I do not think that doctors should resort to threats (such as "if you do not tell me, you will be left alone with your problems") if the patient has a hard time talking about her woes, obsessions or slight insanities. I feel thoroughly violated and humiliated, yet this malaise is disregarded. Unspeakably horrible, I find.

Hello

I found it to be a very decent process and I really enjoyed it overall, though lot of it was difficult and a lot of it was very emotional, and I was stressed about the idea that I would be told I wasn't autistic, and the emotional strain of having to wait for the "final answer" was tough. I was told at the beginning of my session that I would have one of three outcomes: "yes", "no" or "needs more research/we need to speak to colleagues", so I knew I would know SOMETHING by the end of the session, haha.

The main reason I enjoyed it overall was that for the first time in my life I did not feel stupid or less worthy. I could speak about all of my experiences and problems and really just "let go", sit how I wanted, stim if I wanted, not have to make eye-contact etc. because they were fine with that. Basically, it was a relief!

I think if you're worried about having copied other people up until now, and are unsure of "correct" answers, then it's okay to just say "I don't know how to respond to that", for instance. I made a lot of pauses and long-winded ways of saying "I'm sorry, I really don't know" to a lot of questions I was asked during the interview. It made me realise how little I really had as a personality... like you, I think, so much of my "persona" had been meticulously assumed from other people.

The speech therapist was the head of the autism clinic I visited. She was the main specialist and it was her who took me through the ADOS-2 and the actual "autism" practical tests, as she knew what to "look" for. (The clinical psychologist was literally the psychological side of things; taking my history and looking for potential psychiatric reasons for my behaviour and experiences). The speech therapist was interested in my uses of language/communication currently and in earlier development as well. She for instance pointed out many historical (with evidence from my mum) and current uses of my highly literal phrases and communication.

I understand how worried you are. It's a hard thing to have to go through. A good specialist should be able to let you feel comfortable and ask the "right" questions to get you a good assessment. I can't really answer if the young woman doctor would give you better or worse chances to be taken seriously... though if she doesn't know much about autism, then I wonder why someone allowed you to be seen by her as an "autism specialist"?

(Or am I misunderstanding... is this the doctor you are hoping to give you a referral to an autism specialist?)

Thanks again, oldbarn, your words are a great comfort. You explain things the way I experience them myself, and I find solace in your thoughts. Thank you.

I am currently visiting a doctor at a neuropsychiatric clinic, and the young doctor is, indeed, "the specialist", who is to give me the final diagnosis. Which is odd to me, because she said that she probably needs to consult another doctor, whom she referred to her as her "tutor" - that truly set off alarm bells. It seems to me I am her guinea pig!

Let me put it to you differently, LarryDoe. The older, very seasoned practitioners often are the worst at diagnosing this, especially in adults, especially in women, because adult autism didn't exist (well, wasn't on the radar) at the time when the older docs were training. So sometimes the younger ones are the best hope! And you should view her consulting another professional as a good sign - she is conscientious and thorough.

Thanks, BeaArthur, for knocking some sense into my head. Naturally, my mind is playing tricks on me, of the worst kind. While I did initially think that a new doctor is more likely to be open-minded, I am afraid she might miss something that I fail to tell her too.

I was at a group for people with personality disorders though I was convinced I didn't have one. I didn't get on with the group.

The entire SCID-II was done on me (sometimes only the diagnoses indicated in the questionnaire are looked at, but the psychologist wanted to get an idea of what traits I had across all the diagnoses). I didn't have a personality disorder, though I had a range of difficulties some of which were from being abused and some of which didn't quite fit the personality disorder criteria and instead linked with autism. (E.g., I have social problems but not because I'm anxious, I have routines but I don't fit either OCD or OCPD.)

My psychology referred me to the local autism business (like a charity, except they do profit from training people and are clear that they are not a charity - they do seem to be socially conscious, however). I filled in a questionnaire that was sent to them.

They went through another questionnaire and asked me to rank how urgently I should be seen. It was decided that I was 4 out 5 (5 being immediate risk of homelessness unless diagnosis could get supported housing).

I got more questionnaires in the post, plus some parent reports. I was very anxious so they sent me the questions they would ask me at interview so I would know what would happen. I also prepared home videos of myself to take with me.

I also filled in the AAA form of my own accord which is a diagnostic measure and was included in my final report.

The questionnaires were the AQ, the EQ, a sensory questionnaire from an OT and two parent reports.

On the day of assessment, I went with my wife. We talked about my childhood and any signs my wife had seen, etc. She took notes on the home videos.

Then we had a break because I was getting restless. Found out my house rabbit died during the interview. Was offered to postpone the second part but decided not to as it would only make me more anxious to wait.

Next up the ADOS with just me and the interviewer. This part was filmed to be marked by a second observer.

Then we regathered with my wife and did some more questions.

There was a second professional available potentially to see me, but my interviewer decided it was straightforward and that the ADOS marking would be fine without me meeting someone else.

My wife was sure I'd be diagnosed, but I wasn't. Fast forward a few weeks to my report and I was diagnosed.

I was extremely anxious but my assessor was kind and helpful and made the actual assessment quite relaxing. The same can't be said for my current ADHD assessment with someone who I discovered on my second appointment has never seen ADHD and ASD together and thinks it's very rare!

ConceptuallyCurious, thanks for the long, detailed description of the process in your case. And nice to meet a fellow AS sapphist. How long was the whole process in the end? It seems you went through a lot, the videos, st ADOS, all test and what not!

I am sorry about your rabbit. What an awful thing to happen, especially during the process that is straining itself.

Interesting to hear you had the full SCID-II done. Did they give any particular reason why they wanted to do that to you? Besides the obvious, ruling out any personality disorders.

You did ADOS too? Could you tell me anything about it? I would be interested to hear it from a fellow Aspie's point of view. ADOS is a children's diagnostic tool here, not adult's.

Excuse me, what is the AAA form? I tried to Google that, but I did not find it. I filled in several AS questionnaires myself too, and took them in with me the first time, as well as a big pile of other AS traits papers with my notes. I think the doctor has not even looked at them.

Very good of them to send you the questions in advance. That does not happen here - they do not want us to know what happens, and they make a point not to reveal anything. I have tried to ask what happens next, what kind of questions, what are the tests like, and I get only circumspect answers. Once, the doctor even said "Look that up on Google". I am utterly disillusioned by these healthcare "professionals".

the point of assessment is to look at your spontaneous behaviors, so there is no need to prepare or know the process ahead of time

just be yourself

I am slightly nervous about the process as well. I live in a fairly small town and everything seems geared towards ASD children. I may have to drive over an hour to be tested in person by an adult specialist. Oh, well. It is worth it to know a final answer. My symptoms are the same as Aspergers women. I may turn into a hyper talkative perfectionist in the testing office because I often talk more in doctors or therapists offices than in regular life. Is it important to have a referral from a psychiatrist or general physician to see a specialist...or can you just make the appointment cold?