Are you sure you’re autistic?

Hyacinth starting to bloomTrigger warning: discussion of suicide

Autistic. Or Asperger’s. Or on the spectrum. I usually say autistic because it feels like I have far more in common with classic autism than most people are willing to see. My parents were not surprised when I mentioned Asperger’s. When I started to say “autistic spectrum disorder” instead, they suddenly became dismissive. They might be on the spectrum too, I don’t know but I have my suspicions.

Are you sure you’re autistic? I’ve heard this question a lot of times over the past two months. Ever since I started working towards getting diagnosed, it’s prompted others to do some diagnosing of their own. Sometimes I want to yell at them that if they were armed both with the experience of living this and with the literally THOUSANDS of web pages and articles and books I’ve read, I might take their opinion a wee bit more seriously. However, there is a social rule that says you’re not allowed to yell at your GP or your mental health care provider for being ignorant arses.

Yep. Both my GP and my mental health care provider have questioned the idea that I might be autistic.

Well, actually my GP said, “I don’t think you are autistic at all” and would only give me a referral to get diagnosed after two appointments with him and after mentioning that my mother said she’d always suspected me of having Asperger’s.

And at the mental health clinic where I’ve had two diagnostic interviews, they want to look deeper into depression.

Right.

I know exactly why they want to look at depression. There’s a high comorbidity between autism and depression (in fact, a higher percentage of autistic people are depressed than the general population), so there’s that. But it’s not because I’m actually depressed. I’ve looked up every kind of possible symptom list for depression and they all agree on one thing: with depression, your enjoyment of usually pleasurable activities is significantly lessened. The diagnostician even asked me if I felt that way at the moment or had ever felt that way, and I said no. Sometimes I feel really down or overwhelmed or tired, but there’s usually a situational component to that feeling and it stops as soon as you take me out of that situation, including a simple change of scenery or doing something I enjoy.

But on the intake form, I had to say whether I’d ever been to a psychiatrist before, and being the naïve idiot that I am, I truthfully replied that I’d had four sessions with a psychiatrist back in 1998 after a failed suicide attempt. Hold on, you say. Suicide? I thought you said you didn’t have depression? I’ll explain. At that time, I was overloaded with university stuff and an unreciprocated romantic obsession and seriously not a cent to pay my food with, let alone my bills. So, I thought that if I simply ceased to exist, that would actually be a pretty good solution. I tried ceasing to exist and it didn’t work. Not a good solution. It wasn’t suicidal thoughts that drove me to it, but problem-solving thoughts. Being the problem-solver that I am, I’m not going to try something a second time when it didn’t work the first time. So I can honestly say that I have never spent even a single second thinking about suicide since.

But. Apparently at the mental health clinic. They took one look at my intake form. And decided suicide attempt = depression. Which is what “they want to look into further”. After I’ve already told them that I’ve never experienced a moment of diminished enjoyment of usually pleasurable activities. Ever. Even at my worst fail moments. Even when I didn’t think of showering for over two weeks. Even when the collection agency letters were piling up. Even when I knew I was about to become homeless unless I found about 6000 euros somewhere. I could still enjoy a good book or a cup of tea or going to the beach with friends and having a couple of beers. Irresponsible maybe, bad executive function fail definitely, but not depressed. (Also not suicidal by the way. I wasn’t kidding when I said that solution failed for me so I didn’t think about it again).

I’ve been telling myself that I shouldn’t focus solely on autism but keep an open mind about possible other explanations. I’ve done some research into AD(H)D, OCD, social anxiety and phobia, depression (yep), bipolar disorder, borderline personality disorder, schizophrenia. I have some of the telltale signs for each of those, but I seem to tick the “no” box on more things than I have a “yes” on, and always a “no” on the thing that most people see as the main symptom, like hallucinations for schizophrenia or a need to clean things obsessively for OCD or not being able to keep my attention on something for AD(H)D.

Autism ticks all my boxes. Even stimming, which I was convinced I didn’t do when I read about it first. Until I realised that constantly stroking my own hair was a stim too.

So this idea that we’re going to “look further into depression” only because I stupidly tried to off myself over 15 years ago MAKES ME SO FUCKING ANGRY. There. I said it. Emotion. Angry. Very very angry. FURIOUS.

I’ll go into how I plan to deal with this in another post.

Edited to include some information about the comorbidity of depression and autism.

Advertisements

24 thoughts on “Are you sure you’re autistic?

  1. The other thing I have to point out: Depression, even when it does exist, is not mutually exclusive with LD/DD/etc. Actually, people with autism are far more likely to be depressed than the general populace. Something about how decades of bullying and being taught that everything about who we are is wrong and being portrayed as subhuman in the media takes a toll, apparently. */sarcasm*

    Speaking from experience: The depression I developed as a teen did not result in my social isolation. Yes, the isolation became more apparent when I started hiding in my room as much as possible and seeing how long I could go without talking before someone noticed (9 days during the school year, 12 on vacation), but it was already there. And the cause of the isolation – bullying – was also what caused my depression. I wasn’t bullied because I was depressed, I was depressed because I was bullied. Seems to me that those who see social reticence + history of depression/suicidality and assume depression is the cause of all of the other things might be putting the cart before the horse. Situational depression is a thing, after all, and it tends to be caused by really fucking unpleasant situations.

  2. Yes, I should have mentioned that the reason I looked into all that was in part because of the high comorbidity and/or frequent misdiagnosis of those disorders as well. It’s just that I’m not depressed. Misdiagnosis is dangerous and it takes away the validity of actual depression diagnoses.

    • Yes, that, too.

      I think maybe it has to do with the tendency of people to want to put stuff in boxes and jump to conclusions because it’s easy. Which isn’t necessarily a problem. The big problem comes when people refuse to re-evaluate their tentative conclusion when evidence that calls it into question shows up. Confirmation bias is bad.

    • I’m also very sceptical of the first conclusion being something that can be managed with medication. This clinic is very big on “treatment goals” and “implementing plans for change”. They don’t have a “diagnosis only” slot in their intake procedure. I don’t want to be treated. But that seems to be their default.

      I should have walked out when the diagnostician said something about classic autism and how I was obviously intelligent and classic autistics all had low IQs. I should have walked. Instead I only interrupted her (rudely, I hope) and said “Now that’s something I disagree on.”

  3. It is so hard when professional caregivers doubt what you are dealing with. Sure, they are usually very wise with much schooling. However they do not know what it is like to be in your head. Anyway, wonderful thought-provoking article.

    • Thank you! It is very hard, especially with all the issues surrounding authority and “one rule for you, one rule for me” problems we all seem to have. In my head, I have a stubborn streak of what is pathologised as Oppositional defiant disorder but what I call simple common sense. But it’s still nearly impossible to vocalise or otherwise act on those thoughts.

  4. A big part of why it was so hard for me to consider autism as something I could be dealing with was the fact that I had been diagnosed with bipolar disorder five years ago, and anorexia a year before that. It has basically taken me until now to accept those two diagnoses, so it was in me really deep that whatever odd behaviors or coping strategies I had for uncomfortable situations must be byproducts of those issues…definitely not autism.

    And I mean, I do have bipolar, and I do have an eating disorder. But hey, as it turns out, I’m also autistic. In my case of course it wasn’t really other people telling me it was all that stuff and not autism, but I was pretty damn sure of it somehow. I think it’s kind of a cultural phenomenon that it is easier to think about these things in terms of mood disorders or anything else you can throw lithium and Prozac at and say “something is wrong with you but don’t worry, we will fix you” than give in and say “oh ok then, you’re/I’m just differently wired.”

    • You’re definitely right about the medication thing. We live in a society that loves to fix things. But people don’t really like it when you say you don’t want to be fixed. They see it as “imposing” when you ask for acceptance.

    • By the way, if anyone here is interested in seeing what acceptance looks like, there’s a marvellously touching moment in Stephen Fry’s documentary about bipolar disorder, The Secret Life of the Manic Depressive.

      It starts at 39:41.

  5. I’ve seen that documentary and I love it. It’s amazing to see all that come out of Stephen Fry, since it’s so easy to see him as the guy who goofs off with Hugh Laurie all day and that’s it. But all that life and comedy and genius comes from somewhere, and it comes from his problem or his disorder or his whatever you want to call it. Bipolar has hurt him so badly but it has defined who he is really.

    But I feel like I must not have finished the film, because I would remember that scene. I got a weird and very uncomfortable sinking feeling in my stomach that is, I’m pretty sure, a mixture of jealousy and self-pity, which are two things I am way not about. But that is the way it is supposed to happen. That is the way people who love you are supposed to treat you. Thanks for pointing that scene out.

    • It was uncomfortable wasn’t it? Like why isn’t life like this ALL THE TIME. (I can probably come up with an emotion word if I think about it really hard but it’s easier for me to just make a comparison). And in a way I think they were all feeling a bit uncomfortable too. Because nobody was smiling (or running the script that said they were supposed to smile on camera). It was a fascinating scene. But the words were right on.

      Another thing that was right on? At the end, he asks all the people in the documentary, if there was a button, right here, that would make all of it stop, no more depression or mania, would you press it? And everyone said no.

      • I’ve been asked that question before, and I’m not quite as adamant as a lot of other people. I think at this point, I’d say no, but it’s because I’ve learned a lot of ways to recognize when things are getting problematic and out of hand, like, to a dangerous level, and I can usually do something about it. But if I could push a button and undo the trauma of manic episodes and hospitalizations and psychotic breaks and suicide attempts, not just my trauma but the trauma it has had on the people in my life, I wouldn’t be so quick to say, “no, it is who I am.” I mean that trauma has been a significant factor in defining who I’ve become, but I’m not sure I couldn’t have been a pretty ok person without dealing with that.

  6. I do have depressions, but I rarely experience disinterest in “usually pleasurable activities”. That is the one of the depression symptoms that rarely applies, even when others do – like heavy sadness, being unreasonable tired, have trouble thinking clearly et.c. What I do experience is lowered capacity to undertake those activities, and that is depressing.

    Anyway, as someone else pointed out, depression is more common amongst the autistic population than the general population – same with social anxiety and OCD. At least that’s what I have read in several books on the topic – although I don’t remember their references. I understand your annoyance about them getting fixated on a 15 year old record because it has the trigger word “suicide attempt” in it.

    What type of mental health clinic is it? Maybe you would be better off going to a specialised autism clinic, especially with professionals with expertise in females with aspergers? (regardless what they call that now)

    Do you live in Holland, or are you a Dutch living abroad somewhere else? I notice you use the term GP, which is common in Commonweath countries like Australia and the UK, so I’m presuming that you don’t live in the US but either continental Europe, UK, Ireland or Australia. Probably Holland. Anyway, my point is: what options do you have?

    • Thank you so much! That is really useful to know. Both the diagnostician and most of the resource material I could find basically gave the diminished pleasure as a key feature, so it’s good to know that it isn’t.

      I live in the Netherlands. The system we have is that specialised centres called “GGZ” provide about 90% of all mental health and addiction services. That means supported living, forced hospitalisations, all those things go through GGZ. But for people who don’t have “acute” problems the waiting list is very long and you have to have a referral from your GP. It’s basically about money I believe, because the beauty of our system is that we’ve all got a standard insurance which also covers mental health. But someone like me can basically get about 4-6 “treatments” and then you’re on your own again.

      I’ve tried finding resources about how to get a diagnosis from somewhere, preferably someone with some experience with autism in adults (female adults would be a plus), but I haven’t found anything specific for the Netherlands. (In fact, that search was how I eventually found Musings of an Aspie and the autistic blogging community). My GP didn’t know of any professionals in the area doing anything with autism, the mental health clinic he referred me to was the only one that mentioned it on their website.

      I have found one autism coach (not a licensed psychiatrist, but at least someone with some sort of background in psychology) who can hopefully help me with some further resources and support, but I think that for now, I’m stuck with this clinic.

      • The GGZ system sounds like it serves as a bit of a bottleneck for relatively “non-acute” persons with mental health issues. Maybe they try to get you diagnosed with depression first, to get you into the system at all? After all, if they don’t think you have any severe mental health issues (autistic or not) then they may see no need to diagnose you with anything.

        The system in Australia is that you need a referral from your GP (based on a short questionnaire where they count the points) and then get a 50% refund for 6 sessions within a year (+ 4 more if required; that requires a new review by the GP). The referral is with an independent mental health professional – my GP asked me to come with a suggestion. I was referred for depression and later social anxiety, and my current psychologist is the forth I’ve tried in Australia and the only one who specialises in ASD. I wasn’t pursuing a diagnosis for Aspergers but decided to see an autism specialist after starting to realise how much of the female asperger profile that is similar to the problems that I’ve had or have; to improve my chance of my situation being understood in context (so for example, that working with “worried thoughts” aren’t that relevant for socialising in a party/dinner situation because sensory overload makes it hard to even think + I can’t hear people for background noise. So worries are the least of my problems). That worked, very much so, and the therapy has been hugely helpful, I feel really well understood.

        Anyway, I guess the Australian system is not that relevant to you:-)

        What are your reasons for wanting a diagnosis – Primarily psychological validation and peace of mind, or do you have practical needs for support as well?

        Do the GGZ clinic list the diagnostic criteria they operate with on their website? For example, if they operate with very inflexible, stereotypical criteria like a complete lack of eye contact, weird gait, conspicuously monotone voice and lack of expression, a complete lack of ability to understand how the social work works, and hobby collections of old bus schedules et.c. then it is highly unlikely you as an intelligent, mature woman with heaps of survival tricks in your hat, accumulated over a lifetime, will fit into that template. They wouldn’t write the above list officially but they may write something else that gives away that they are not really into it.

        Probably the worst thing to do is to antagonise them (which is probably easy to do, given the level of frustration). They are all just human, so if they think you are a nuisance then they’ll probably NOT want to listen to you and/or just try to get rid of you ASAP.

        Do you have a list of the standard autism criteria and examples of how you meet them? (just advice I’m passing on from somewhere else… Maybe Musings of an Aspie or Aspergirl Maybe). Will you need to bring your family members or something like that – and can that help? Have you tried to ask in Asperger support groups/forums if anyone else is from the Netherlands or knows someone who is, who may be able to assist with advice and/or connections/names to contact?

        • My main reason for wanting a diagnosis is so I can start working on finding solutions that will help me not get fired from 75% of my jobs and that are specifically set up to support autistic people. I’ve done generic job coaching and I kept running into this brick wall of “but I don’t understand how my boss feels about me to make him want to fire me”. I never get complaints about the work I do, actually the opposite. It’s always “attitude” or “insincerity” or things like that.

          So I have a very concrete reason to want this. Apart from that, a bit of validation would be nice so I don’t have to feel like a crazy person anymore.

          The diagnostic criteria are hard to find although officially Dutch psychiatrists use the DSM-IV (DSM-V hasn’t been translated yet, probably next year). I’ve found some clues in the questions they’ve asked which seem to centre a lot on how comfortable I feel making eye contact and taking the initiative in social interactions.

          What I’ve been planning to do is write down a list of things that I think would not really be explained by a single diagnosis of this or that. The problem is that for anything to become a “diagnosis” I have to feel sufficiently impaired by it in my day to day functioning. And well. I function pretty ok. I’m not always 100% happy and I struggle with a lot of things, but I manage. Except for getting fired. About once every 15 months. On average. That’s not normal.

        • No, it isn’t… Well, that is a good reason (well, good reasons).

          Maybe it would help to focus on the employment aspect, since that’s where you need help and where social impairments get in the way for your well being and ability to sustain yourself… That you need specialist employment services to help you to maintain yourself in employment in the long run, which will get harder as you accumulate failures and a history of interrupted short term employments. That you need help to work with your social communication issues / social skills to break the cycle so you can stabilise your employment situation, and that you believe that your social communication issues are caused by Aspergers. List examples of social impairments/difficulties and how you feel it played in in specific failed-job situations, such as lack of ability to read social cues, lack of intuitive reciprocity and so on… Plus other relevant aspects, such as sensory issues, and their impact on your life/employment/productivity, even if they aren’t official criteria. I imagine that may help, to make it easier for them to understand why you are asking for help in the first place.

          (I am just guessing, and have no expertise or personal experience in that direction)

          Maybe it also has to do with how you compare to the other patients who use their services. If the GGZ covers the entire spectrum of mental disorders including severe psychosis and infantile autism then your symptoms may seem very light to them in comparison…

    • I looked up one of the other GGZ clinics in the area and their waiting list for adult autism intakes is 70 weeks. Yes. Nearly a year and a half. No wonder some people think autism is “trendy”.

  7. Pingback: Oh Right, It’s Not Just Autism | Notes On Crazy

  8. Amazing – your GP wouldn’t believe *you* when you were talking about *your own mind*, but will happily believe someone else’s suspicions? HOORAY FOR NEUROTYPICAL PRIVILEGE, EVERYBODY! D:

Leave a reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s