Further testing

Well. At least I am a little bit autistic enough.

With regards to the intake interview you have had with my colleague on August 13th, we would like to conduct an Autism Spectrum Disorder test with you. Our office manager will call you to set up several appointments, at least one of which will be with one of your parents (to get a heteroanamnesis on your past), and one to get an anamnesis on your current situation (for this appointment we will also invite someone close to you, this has to be someone who knows you well).

So all that effort was just to see whether I even deserve to be tested? Dear lord.

And the interview with someone close to me will be interesting. I’m single. I have a few close friends but I can’t really say if any of them know me well, because I tend to downplay or hide my weaknesses. Do my friends think I’m autistic enough? I could ask my ex, he definitely agrees on me being weird. 😛

But am I supposed to be present at both those interviews? The wording seems to say (“also”) that I’m only to be there for the second test, but not the one with my mother or father. So why one and not the other? CONFUSING.

31 thoughts on “Further testing

  1. Holy crap these guys are really making you jump through hoops. Kind of annoying that they aren’t seeming to acknowledge the importance of the issue to you. Or maybe a better way to say it would be that they don’t seem to be acknowledging that you have a better understanding of yourself than anyone else and that you have been approaching the whole subject with unbiased objectivity and rationality.

    And that letter is really confusing. When I read it I assumed the interviews (both/all of them) would include you, but now that you point it out, I’m really not so sure. :-/

    • To quote House: “Everybody lies.” Medical professionals have to assume that a patient cannot be objective about their own situation, and I actually agree with that assumption. What I don’t get is why being subjective about anything that concerns me is a BAD thing. This has emotional importance to me, like you say as well, and I’ve yet to see anyone inside the medical world acknowledge that. Maybe because they don’t see my emotion in my face or behaviour. I keep telling them in WORDS. When I have words.

      • what I don’t get is why they assume you won’t be objective but your parents will. A large part of why I’ve hesitated over going for my evaluation is the parental interview because I don’t trust my parents to be truthful. They will say whatever they think makes them look best. If that means exaggerating my childhood foibles beyond all recognition, they’ll do that. If it means downplaying or outright denying my difficulties, they’ll do that, too.

        • “Give me the courage to change what I can, the strength to accept what I can’t change, and the wisdom to see the difference between both.” (Sort of loosely paraphrased from memory).

          If a professional cannot see my parents’ subjectivity, then the chances of them doing something that will benefit me are slim anyway. The only thing that I would be able to do is suggest that maybe someone else from my past would be able to give more objective information. Like neighbours, or aunts/uncles, or siblings. It doesn’t say anywhere that parents are all that’s allowed, especially since there’s a high likelihood in adult diagnosis of parents not being alive anymore. They just want a second opinion about my childhood. (In your case, with abusive or bullying relatives, I think you have every right to suggest that someone else will be able to give a better heteroanamnesis).

          But apart from that, it’s out of my sphere of influence. If my parents’ testimony will cause me not to be labelled as autistic or Asperger’s or on the spectrum or any of those options, then I’m exactly as badly off as I already am. Undiagnosed. I have to stop being afraid that I’m not autistic enough to belong. I have to believe that understanding myself and my challenges, even when not acknowledged by a professional, will help me to find better strategies and coping mechanisms. It sucks but I won’t be any worse off.

        • This is something I’m really worried about. I find my parents will not only say whatever they think makes them look best, they will completely twist facts of a situation around so that they can believe what they want to believe. When a psychologist tried to diagnose me with ADHD, my parents began emphatically denying all the behaviours that had led her to believe I had ADHD (I’m pretty sure I don’t have ADHD, but those behaviours were very real, especially my fairly nonexistent executive function.) My father, especially, likes to downplay or outright deny my difficulties, even when it’s just the two of us talking. He’s indicated on multiple occasions that he believes I’m “making it all up” and that I don’t have any of the struggles or traits I say I have.

          Unfortunately, I don’t even have relatives, neighbours or anyone else who would be able to talk about my childhood (I doubt any of my early childhood teachers would be able to remember me), since my parents weren’t close to any of the relatives, and almost never spoke to any neighbours. We were pretty isolated.

        • Yes, I have same issue exactly. It’s part of why I’m hesitant to pull the trigger and pursue diagnosis – they’re going to want to talk to my parents, and I’m not able to trust my parents to be honest.

        • My psychologist took my remark – that my mother minimised a lot of my behaviour out of fear of getting stigmatised – pretty seriously. This reminds me that I definitely need to write up that part of the diagnostic test.

        • Your parents not being close to anyone is actually a pretty convincing argument in your favour. They might not be completely autistic, but that’s definitely pointing towards some autistic traits. And THAT means it’s running in the family, same as with me, which was one of the things that made it into my diagnosis.

        • What do they do with people who are no longer in contact with anyone who can talk about their childhood? They can’t exactly get a court order to drag your parents in. What happens if you say “that isn’t an option”?

          autisticook, I do look forward to reading about that part of the diagnostic test, because it’s the one that I anticipate being the most problematic if I do actually decide that going through all this might be worth it.
          I’ve never really thought of my parents’ social withdrawal as pointing towards anything. It’s not exactly the kind of thing that I would have ever thought to mention to a clinician (which is why self-diagnosis before a professional one is so important… it helps people figure out what details are important and which ones aren’t).

      • I think that’s the more important thing. Because I think you’re right, it’s best that doctors assume patients have a bias (though I’ll say again that I thought the letter you wrote was remarkably well thought out and clear, and yeah, even objective). But in this sort of situation it is disappointing that the emotions tied into it aren’t being considered (or at least it is kind of seeming that way, but I know I could be way reading it wrong). I keep thinking that if they were running tests for cancer or HIV or…I don’t know I’m trying to think of things that are with you for life…they would be very concerned about how they went about it to best respect any emotional response you could have to the process and the diagnosis. And yeah this is different because it’s not life-threatening (autism very much does not equal cancer or HIV, that is not my point), but it is still something that touches your whole life, and I wish they were making it more obvious that they understood that.

        Oof I hope that makes sense. I don’t always have words either. I often have lots of words, too many words, but very often they are not the right ones.

        • Thanks for saying my list was clear and well thought out! I’m still adding stuff to it when I remember other things (like how I made passports for my Lego figurines as a child). It’s kind of fun actually. Like an oddness diary. 😀

          But yeah I agree with the concern about physical illness having an emotional impact. Whereas with mental or neurological illness? Well, you’re already emotionally unbalanced anyway, because it’s a brain thing, right? *facepalm*

  2. When my therapist had the meeting with my mum to decide if I had signs of autism at a young age she could not remember if I waved goodbye or not when she left me and things like that, so I suggested we called my uncle as well because he knows me pretty well. Maybe there is someone else to call for you? A teacher from the past or a mother of a friend or someone. You may also benefit from telling your therapist about how your parents work and that their answers may not be correct?

    And I have no idea if the letter means to go alone or with the others, maybe give them a call so you’ll find out?

    • You made the exact same points that I thought of! I’m glad to hear your therapist was open to the suggestion of calling your uncle to get more information.

      I will wait until they call me to set up the appointments, at that point it will be easier for me to ask them what each appointment entails. And it means I won’t have to call them myself, which I try to avoid as much as possible because I never know who to ask for. 😉

  3. My guess would be that you aren’t expected to be at the appointment with your mom and/or dad, although you won’t know for sure until you ask them. They probably run into situations where the parents don’t live in the area and things have to be discussed by telephone, so that could be one reason it is vague.

    This does sound like a lot. I had one appt to discuss getting evaluated, which actually then became part of the evaluation itself. I then met with a second psychologist for the ADOS and then with a psychiatrist for a discussion. After that, I came back to see the first person, who then gave me the report compiling all three people’s observations and conclusions.

    I definitely felt it was all worth it for me, even though it brought out a lot of anxiety!

    • I think it’s very interesting, actually, that they don’t mention any kind of diagnostic testing at all. Just interviews.

      Which is a pity because I am extremely curious as to how I would do on standardised tests.

      • The ADOS is a sort of diagnostic interview. She had a form and asked me questions from it and wrote down my responses. There were also a few activities I had to do as part of it, related to imagination and pretending and such. I didn’t do any written testing.

        • Thanks for the info! It’s just so incredibly hard to find reliable information on the diagnostic process, especially here in the Netherlands. I’ve just found some sort of recommendation sheet for psychotherapists which has definitely given me some clues as to why it’s been so hard for me to get to the testing stage, but even there they’re pretty vague about the diagnostic tools they use. A questionnaire being read out loud would make sense in that respect. They all love to do loads of talking.

  4. For my son it took years! they kept wanting to go slow!!! We started at four years old and he got the answer at over seven years old. Stay strong and just keep moving forward.

    • Thanks for your comment! It must have been hard for you and your child, not getting the support you needed. Going slow is fine when you’re not actually dependent on an answer.

  5. Mine was all interviews (but mine was also rather inconclusive and not real testing because of money and stuff). I was surprised because I was expecting tests of some sort (although i suppose answering questions is basically what a test is)

    Good luck!

      • Oh true. But maybe watching confusion and figuring out what you get confused at and how that happens is a secret part of the test? But I agree about written questions. They are much nicer and clearer (and you can reread them for clarification without having to ask and lovely things like that).

        • It’s even simpler than that: if they want me to understand the actual question and answer to the best of my ability, they should do it in writing. Otherwise they’re saying that my understanding of the question and my ability to answer don’t really matter.

        • Well, that’s just silly of them, then. (Sorry if I was misunderstanding/doing something wrong/minimizing you somehow. Sometimes I do that on accident (especially if I end up taking things too far), and I don’t mean to, and I can’t tell if I did here or not).

        • (Also, I really don’t even know what I am talking about since I didn’t even have “real” testing, they just sort of talked to me and said you’re probably autistic, and that was good enough for now/all I could afford, so really I’m just talking for the sake of talking right now and probably being no help at all.

          Sorry about that.)

        • Don’t be sorry! If I ever get angry, you get unfiltered autisticook and you’ll KNOW, trust me. 😛

          In other words, I was not upset or angry and you didn’t doing anything wrong and definitely didn’t minimise me. You were sharing your experiences. I can’t remember where but somewhere there was this discussion on how autistic people show empathy and it’s often by sharing our own stories as a way to show we understand. But non-autistic people often think of that as being narcissistic. So we’ve learned to say sorry over and over again. Among ourselves, however, we often default to that behaviour… and guess what? It’s appreciated here. 🙂

  6. First of all, I love your blog. I’ve been reading it obsessively since I found it. Second of all, when I had my diagnostic evaluation done (this January), the psychologist used two tests; the Autism Diagnostic Observation Schedule, and the Autism Diagnostic Interview-Revised. The ADI-R is typically an interview with just the parents, but because I’m 23 (aka, an adult), I was encouraged to be there as well. It was just with my mom, and she actually wanted me there because she said she couldn’t remember everything about my childhood (I have 6 siblings and things were always kinda crazy). I’m glad I was there because I was able to clear some things up and make myself sound “autistic enough” (which is stupid, but it’s what we often have to do, yes?), because my mom tended to err on the side of normality when describing my childhood. The ADOS was the one with just me, and I assume that you’ll probably use that as well…it’s the “gold standard” apparently. I did also have to get a close friend or non-parent family member to fill out a questionnaire called the Social Responsiveness Scale. It’s a measure of autistic behaviors. I had one of my sisters fill it out, because I knew she’d be brutally honest. 😛 And she was. Anyway, just wanted to share some of my experience. I totally understand and empathize with all the hoops you’re having to jump through. It SUCKS. Best of luck.

    • because my mom tended to err on the side of normality when describing my childhood

      THIS. This is what my mum does as well. She’s JUST AS SCARED as I am of being judged and found wanting. So it’s in her emotional best interest to make sure nobody thinks of her children as abnormal. It’s upsetting to her. I completely get that but it also makes it harder for me to get some acknowledgement of my differences.

      Thanks for sharing your experience with your diagnosis by the way, and I’m really really flattered you like reading my stuff! 😀

  7. I was recently asked, by a school psychologist, if the label of “Autistic” felt right to me. I replied: “it doesn’t matter if it feels right to me, the psychological evaluation shows that i am not, by current DSMV criteria.”

    the diagnosis still doesn’t seem entirely right, and i have had it scrutinized by a few others in the psychological circle i tend to bounce around within. a few have said that there seems to be gaps in the testing done. i looked this up, and yes; there were quite a few gaps.

    please be careful.

    • Thanks, I will. I have been reading your story as well, the whole testing process fascinates me because it seems so… haphazard. It’s like they have no idea what do about adults who could on the spectrum. And if someone does have an idea, there’s 20 others who disagree with it.

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