aspergers, adhd, anxiety, or appropriation?
July 24, 2015 5:08 PM   Subscribe

Is there any benefit to pursuing a diagnosis for neurodevelopmental disorders (specifically autism spectrum disorder or adhd) as an adult? Are there reasons not to seek a diagnosis in that realm? Are online screening resources useful for them, or is the use of those resources problematic? Is it better to stick with anxiety and depressive disorders, both as a means for seeking treatment as well as a means of self-understanding? More to the point: Am I trying to figure out what's wrong with me, or am I just trying to earn a Golden Sympathy Star?

Oh, hello. This is the part of the question where I go on for several paragraphs about how awful I feel. I am trying to figure out whether it is worth it to pursue therapy or meds for what I'm going through right now. The thing is, I have a long and unsatisfying psychiatric history that has not, I think, correctly assessed my condition or needs, and I'm really reluctant to get pulled back into that, but I am not sure how else to get help.

I have been to many, many therapists and psychiatrists, and have received quite a few diagnoses, primarily for depression and panic, but more outre ones as well, including borderline personality disorder. That one really began my disgust with psychiatry, as I don't think I had it, and I think there are gross undertones to it, such that it becomes more an accusation than a diagnosis. My question doesn't involve the validity of that thought; I am only using it to help explain my trouble with going back to therapy.

For some time now, while depression and panic have certainly dominated my life--to the point that I spent much of my adult life on disability, housebound, on ever-increasing doses of medication--they have been really unsatisfying explanations for other difficulties I have, difficulties that seem more systemic. Difficulties that persist even when periods of panic attacks and depression let up.

So, like everyone with an internet connection, I'm aware of the disorder we used to call Asperger Syndrome, now wrapped up in ASD. In the past I've taken little quizzes about it, felt a sense of delight at my high scores, and went on with my life. And similarly, I have taken tests regarding ADHD, and laughed off the results.

But there is something wrong with me. And I don't want it to be those two things in particular, it's just that they keep presenting themselves, and they make a good deal of explanatory sense.

And I know that's the way psych diagnoses are. I've played the same game everyone with a DSM has, gone through checking all the symptoms that apply to me, given myself endless diagnoses. I know that even when it's not done in fun, even when it's done seriously, diagnosis-shopping is a danger, at the very least a danger to your self-definition. I know that with Asperger's at least, internet people have flocked to it with a motivation to earn sympathy points, if I'm understanding their motivations correctly, which I may not be, because, well, there's that undiagnosed bit of trouble reading people's minds again.

Can you tell, in your own mind, whether you are diagnosis-shopping, or whether you are engaged in self-discovery with an eye towards doing something about it? Am I just looking for an easy answer to why my life feels so shitty?

My life is very constricted. This is apparently by design. I have opportunities to go out, to socialize; I do not take them. I am a little lonely, but conversations are excruciating and exhausting. I have friends, two of them in fact. I have not spoken to either of them in months. I do not miss them. I do not wonder particularly what they are up to. I enjoy them briefly when I am around them, and then they disappear from my mind. I cannot listen to conversations for very long. Some of my favorite things to do with friends involve eating at places and staring blindly at a TV while other people around me talk, so I don't have to do anything. If I try to concentrate on what people are saying, if it is not entertaining or interesting, I find myself seizing up with anxiety, or going away, or fidgeting, or getting up, or blurting out some random change of subject. Mostly I just stay home. Or if I go out, I do so in my circumscribed way. Used bookstore. Grocery store. Don't talk to anybody. If forced to talk, calculate correct small-talk verbiage. Smile if possible. Spend drive home going over conversation, look for parts done wrong. Analyze. Do better next time. Promise.

My work life consumes an enormous amount of time. I read about people with Asperger's collecting train schedules, or memorizing some form of detailed lists. I do not have that in particular--nothing around me interests me enough to think about in that amount of detail, except that my job has evolved over time to be, basically, staring at a small number of hyperdetailed spreadsheets and performing repetitive tasks on them to generate patterns. This is apparently very good for my job, since the patterns are about money, and apparently few people can do them the way I do them, because everyone comes to me with more details and more details, and I think my perfect job would be just an endless stream of these columns of data, doing really complicated and frustrating reconciliations, ending up with simple line graphs that make everyone like me.

Because I am not sure how to make anyone like me. I do not make jokes with anyone at work except one safe person. I do not know how to make conversation. This is not quite true. I am in my 40s. I have heard enough conversations to know how they are supposed to go. But I am not interested in people's lives, and I think that shows.

People describe me as cold and aloof and intelligent and distant. I get in stupid arguments at work over niggling details. I have learned mostly how to avoid those arguments but sometimes they still happen. I cannot bear people being wrong at me.

I write you an email and I spend like half an hour doing it, making sure I get all the words right, and then when I send it, I read it again, and again, trying to make sure I communicated it. Sometimes I do. Then other times, like today where I outlined a multiple-scenario process and got the outcome of one of the scenarios wrong, I just want to crawl in a hole and never be seen by humankind again.

I walk on my toes. I put my fingers in my ears when there are loud noises. But sometimes I put on headphones and blast loud noises I like in there instead. Sometimes my hands are so sensitive I can't bear to touch anything. I shake them at a specific rhythm to keep them in line.

My father died, and I grieved. I do have emotions. I have lots of them. I don't always know what they are, and I can often not explain them at all, and I don't know what emotions you have unless you are extremely clear about them. And if you start to tell me about them I will probably drift off and starting doodling or ask you about a movie I just saw.

But there's no treatment for any of this, right? I mean, how could there be? My entire history of therapy sessions goes like this: I walk in, someone wants to shake my hand, I freak out a little. We sit down. So, mittens, how are you? I am feeling very bad. I explain for five minutes feeling bad. The therapist then spends the next forty minutes talking while I am replaying one of the daydreams I go back to constantly, sometimes winning the lottery and then what would I do, or writing a great novel and then what would I do, and suddenly I owe someone a hundred bucks for having sat in an uncomfortable chair and daydreamed for three-quarters of an hour.

I don't even mind being like this, really, because it's actually far superior, I think, to what I see people doing out in the world. They are incomprehensible. I once told a therapist that I felt like I was living among inscrutable robots. You have to watch their actions very closely so you can try to learn their programming, because otherwise what are you going to do?

Except that I do kind of mind. I mind that there are things I would like to do, things I would like to be very interested in--things I am interested in, that I think about constantly, but when I sit down to do them, suddenly I'm off playing Swarm Simulator or 0h n0 or find myself in the kitchen making myself a sandwich which I'm not supposed to have because I'm supposed to be on a diet but like every other project I ever try or every other good habit I think of developing I can manage for maybe three months before it all just slides away and I am back to this robotic baseline.

I don't want a disability. I am not interested in the cachet of being sick. I do not want a trophy for being the sickest person in the world. I used to, yes. If you're going to have a condition, you may as well be good at it. But that is not where I am right now. Where I am right now is trying to understand, do I have one of these two things? Are they what is making me feel so bad? If so, is there any actual treatment available? Is there any point in suffering through the boredom and awkwardness of psychiatry, or should I just get over myself?

And if it's the latter, how does one do that? How does one deal with Asperger-like symptoms, how does one deal with ADHD-like symptoms, coinciding with dreadful anxiety and depression which are to some degree reinforced by those other two?

Is it okay just to fail at life? I mean, the things that make me suck at life are the things that make my job go so well as long as you leave off the parts where I have to talk to other people. So is it okay to just fail at all the people part of life? Is it okay never to accomplish anything ever, and to just torture yourself endlessly wanting to do something, to have a sort of legacy, and yet never ever do anything constructive about it? Is it okay to be a drone, a robot, an exposed nerve, a cracked tooth? Is that what people do? What do people do?
posted by mittens to Human Relations (14 answers total) 21 users marked this as a favorite
Awwww, honey. First, hugs. Second: no, it is in no way appropriation to go and talk to a specialist about autistic symptoms. Promise. People who self-diagnose get a lot of condemnation on the internet, but that rather ignores the fact that it is really pretty difficult to get a diagnosis as an adult without specifically getting yourself evaluated by a specialist. If I couldn't breathe when it was hot out and I went to the doctor to see about asthma, would I be wrong for wanting to be evaluated even if my not-breathing was caused by something else? I like to think not. So it is with functioning issues. It's not dangerous to say "Hey, does this sound like me? Can I borrow some techniques on how to function from what these people are talking about?"

So. My heart breaks for you because I have consistently enjoyed your contributions on the Blue and the joy and kindness you bring to commenting there. (Cold and aloof and distant are the very last things I think of when I think of you!) I don't think you are inherently bad at socializing. Maybe you miss nonverbal cues; for me, I deal with that by socializing mostly with people who are okay with me not getting nonverbal cues and using verbal ones to figure out what is going on instead. I think focus issues and probably depression are getting in the way of your desire to find and hang out with Your People rather than your cannot-do-nonverbal-cues ness.

What you are describing re not being able to pay attention for long stretches of time seriously sounds like ADHD style symptoms to me. Question: does that get a bit better if you drink a lot of coffee or a lot of caffeine? Stimulants affect people with ADHD a little differently than they do people who don't have ADHD, and often they help. (On the other hand caffeine is also an anxiogenic and can really fuck with anxiety levels, so it's not a cure-all--ask how I know!) Please go and get evaluated for that at the minimum--you can fix that with meds in a lot of cases. Meds that will help you focus longer by giving you more mental energy to hang onto a train of thought.

For the more autistic stuff--stuff like the sensory integration and the shaking your hands, you realize that's pretty classic autism spectrum stimming right--anyway. The bad news is there's no way to "cure" those parts of yourself by making them go away. The good news is that you can absolutely figure out how to work around stuff that's super hard for you and make yourself a good life anyway, just as you are. If your coworkers are not interesting to you, go and find people who are! There are plenty of things I have seen you get up and get excited about over on the Blue. Your coworkers may just not be Your People, and that's fine. But there are people out there who will like you and connect with you for yourself.

A friend of mine just went through the evaluation process for autistic spectrum and got a surprise ADHD diagnosis laid on. I will drop in and ask her when I have a moment what that process was like for her and relay it back to you here, if you like. She started as being self-diagnosed on the spectrum, too, and she's awesome and the diagnostician basically looked at her and went "yup, that's you." It's not uncommon for people who are self-diagnosing to get up their courage and go and talk to a specialist and then have the specialist go "Uh, yeah, you are a textbook case." Anyway, I'll ask her what she has to say and pass it on when I get a chance.
posted by sciatrix at 6:42 PM on July 24, 2015 [7 favorites]

Is it okay just to fail at life?

It doesn't sound like you harm other people or are cruel. Being on disability and unable to support yourself is not "failing at life", but it sounds like you're now self-supporting and have a job that you're good at, where you are valued. You are A Good MeFite. You have friends. What you think about in your head when you are freaking out in an anxiety loop or daydreaming does not actually thinking about your friends does not matter; only what you do matters, and it sounds like you do okay. You have not failed at life, and if you want to be more successful at the people parts of life, or leaving a legacy, you can work on doing that.

Go to a better shrink and get evaluated. It can't hurt. No one will be mad at you, and you aren't going to be hurting anyone by asking a medical professional to check you out.
posted by The Master and Margarita Mix at 7:24 PM on July 24, 2015 [6 favorites]

I don't have a particularly helpful answer, but I wanted to chime in and echo those above me that I also really enjoy your contributions on Metafilter. And from what you describe of yourself, I have exactly the same problem, including the disconnect and disinterest in people (but the desire to have it), the stimming behavior, the highly structured day-to-day life, a billion different prior diagnoses (including borderline personality disorder)...

Well, I could go on, but let me just say that I could have typed almost every detail of what you wrote above, minus the being-good-at-my-job part, and I was diagnosed with ADHD as an adult, on the basis of going in because I knew something had to be wrong with me beyond baseline depression and anxiety. Unfortunately, I have not yet found a medicine or meds combo that has helped, and I'm currently completely unmedicated.

I did finally find a therapist who made me feel like I wasn't just wasting my 45 minutes. She was unbelievably awesome. I stopped seeing her because of financial concerns. But seeing her made me realize how little I'd really clicked with all the other therapists I've seen in my life (and they have been legion). I mention this because it may be worth continuing to hunt for a good therapist, if this is something you'd like to prioritize in your life.

So, I don't have all that much helpful information to add, unfortunately, because I'm in the same spot and haven't found my way out yet. But maybe you would have better luck with meds? I do think it's definitely worth it to get evaluated. Good luck.
posted by whistle pig at 7:41 PM on July 24, 2015 [5 favorites]

Autism spectrum disorders, especially, straddle the line between "psychological" and "neurological" in ways that mean that frontline-level therapists and psychiatrists are not the best first step. You're likely to do a whole lot better with a therapist (assuming you want one) if you have an existing diagnosis when you're talking about stuff like ADHD and ASD. Therapy can't cure either of those issues, but a therapist with training and experience in working with those issues should be able to help you develop successful coping mechanisms for managing them. But getting a diagnosis from psychologist, neuropsychologist, neurologist, or other higher-level specialist will likely help tremendously in pinpointing what additional help you may need or benefit from.

It doesn't have to be about getting sympathy. It can be about defining the problem more precisely so that solutions can be more focused and appropriate.
posted by jaguar at 10:49 PM on July 24, 2015 [8 favorites]

As an adult you would have developed some coping mechanisms for your "condition", whatever it may be.

The question is... are they working well enough, and if not, then perhaps pinning real name on the condition can help you learn MORE EFFECTIVE coping strategies.
posted by kschang at 11:02 PM on July 24, 2015 [3 favorites]

Aspie here. I was diagnosed in my mid-twenties but suspected I had AS since I was 15. I live in Europe in a country where almost no one knows anything about AS. I tried hard to get to the one autism specialist - a psychologist - because I was afraid that a non-specialist would misdiagnose me. After a lifetime of wondering why I wasn't "normal" and getting crap from other people for it, getting the diagnosis was a huge relief. I don't know if that would be a benefit for you, but it was the most important benefit for me.

If you decide to get diagnosed, I believe it's essential to find a professional who specializes in ASD, someone who can consider the whole picture. Before my diagnosis, I lived in the UK for a couple of years. As soon as I had registered with a doctor, I went in to ask for a referral for AS assessment (I thought accessing ASD professionals would be easier in the UK than in my home country as there are autism centres in several cities and my home country has none) My doctor referred me, but a few months later I got a letter saying that because his referral mentioned I had trouble focusing, I should come in for ADHD assessment. Not a word about ASD.

In my teenage years I took every ASD test I could find online. I then compared my score to people on ASD forums such as Wrong Planet. I was frustrated that very seldom did someone on these forums score higher than me, yet all those people had diagnoses and I didn't. The thing with ASD assessment is that tests are just a small part of it. The most important for the professional doing the assessment is to talk to someone who knew you well in your early childhood, preferably your mother. If they can't ascertain that you had ASD symptoms in your early years, they usually don't give a positive diagnosis, no matter how obvious your AS might be in adulthood.

For the past year I have been in therapy because of depression and anxiety. When I started, my therapist was keen to try to "fix" my AS-related issues too. I was adamant that we would leave most of them alone. Given that in 25 years no one noticed I had AS, I believe I have adapted to the neurotypical world marvelously. If I adapt any more, I will disappear. So no, I am not interested in presenting as neurotypical. I'm only interested in working on those AS-related issues that make me uncomfortable, not other people.

Your previous experience with therapy sounds terrible. I've changed several therapists until I found my current one, who barely spoke in sessions until a few months in. Changing therapists is time-consuming and it's exhausting to have to tell your story again and again, but it's worth it. Before you go all in, think about what you're "expected" to fix and what you really want to fix. After my therapist let go of the idea that my life would be easier if I presented as more neurotypical, the focus of my therapy shifted towards getting more comfortable with myself, recognizing my needs and standing up for myself.

If you stick with anxiety and depressive disorders, but you (also) have undiagnosed AS, your treatment will be incomplete and you will be misunderstood. For example, someone treating you for depression might, under the assumption that you are neurotypical, consider the fact that you don't want to socialize often an alarming symptom. For people with AS, not wanting to socialize is nothing out of the ordinary. This has happened to me, even with mental health professionals who knew I had AS. As a result, I felt sad and confused not because I lacked company, but because I thought I should want it but I didn't so something must be wrong with me. "Something is wrong with me" is an all too common default for people on the spectrum. It's dangerous because it's not true and it destroys your self-esteem. So figure yourself out.
posted by frantumaglia at 1:56 AM on July 25, 2015 [12 favorites]

It looks like your question is essentially about whether effective techniques to solve or mitigate your problems exist, in which case searching for an answer that lets you better understand them is not at all appropriation. Like sciatrix said above, if you had trouble with breathing and suspected it was asthma, you'd just go and tell your doctor "I think I have asthma because Reasons Which Are As Follows", and it is good and expected to do so.

My guess is that the best fitting analyses and effective solutions for you might come from a combination of several perspectives: ASD, ADHD, depression, anxiety, perhaps both psychological and physical effects of trauma (growing up bullied for your differences, and/or with narcissistic, alcoholic, or abusive parent), attachment theory, gender expectations, emotional labor, interpersonal relations. In human lives, all of these things are intertwined and influence each other; for example, many folks on the spectrum suffer from comorbid depression and anxiety due to effects of being abused as children because of their differences; or are abused in adult life because of their inability to engage in standard human interaction, etc. So it might be really worth it to explore more angles and see what helps make a coherent story.

In a fantasy world, this would be accomplished by having a council of world-renowned experts in each topic spend a year working together and analyzing your case and writing a comprehensive report, but a good substitute in our non-fantasy world is reading as much as you can about these topics and finding out for yourself. There are tons of great books out there; I'd be happy to share my list if you want; in a somewhat similar situation to yours, these books were crucial to my understanding what is happening and how to fix things I want fixed (not that these answers were always easy).

That being said, it seems like ADHD might be the most immediate issue to address, to just help you focus on anything other than work spreadsheets, and to progress from there.
posted by Ender's Friend at 6:39 AM on July 25, 2015 [2 favorites]

I don't have any experience with ADHD or ASD but I've struggled with depression and anxiety and have spent some time in therapy.

"But there's no treatment for any of this, right? I mean, how could there be?"
Last year I started a DBT skills course and it's helped me a lot. Every week I meet with this group for ~1.5 hrs, where we go over last week's homework and learn the next skill. My group will take about 6-7 months to get through the following things:
  • Mindfulness: the practice of being fully aware and present in this one moment
  • Distress Tolerance: how to tolerate pain in difficult situations, not change it
  • Interpersonal Effectiveness: how to ask for what you want and say no while maintaining self-respect and relationships with others
  • Emotion Regulation: how to change emotions that you want to change
We even get paper handouts. This week I'll hopefully learn how to identify my emotions ^_^

In any case, it's a very different experience from talk therapy. And really empowering in the sense of we don't have to keep feeling like we're failing at life! We can develop skills!
posted by The Biggest Dreamer at 6:40 AM on July 25, 2015 [5 favorites]

Much of what you write could describe me too. I was diagnosed with ADHD a couple years ago, at the age of 39. I'd suspected it for a while, and had checked out some of the online screenings. At first I too worried I was kind of diagnosis shopping, but eventually things got to the point where I asked my psychiatrist about it. We did the screening and it turned out that I'm practically a textbook example of inattentive-type ADHD. I had mixed emotions. Obviously I wasn't thrilled about the diagnosis, but it also explained a lot of things (if that makes sense). Plus now that I had identified the problem, I could more effectively try to find a solution, and that in itself was comforting.

Good luck to you.
posted by SisterHavana at 2:02 PM on July 25, 2015 [1 favorite]

i was tested for ADD as an adult, at the behest of my therapist. At the time, I was relatively newly dx'd bipolar, and i suspect she mainly wanted to see which symptoms went with which thing. (result: i have ADD)

but all that is moot. you are miserable. you don't have to be miserable. sometimes it is worth it to forget about a diagnosis and just treat your symptoms.

posted by megan_magnolia at 5:19 PM on July 25, 2015 [2 favorites]

This is just to nth what everyone said above, but getting a diagnosis can be useful for finding a therapist who specializes in the condition and can actually help you. (The official diagnosis step isn't so necessary if you're sure you know what's going on, but if you don't know what direction to go in or need confirmation of your suspicions, it helps.) I felt like I was spinning my wheels in therapy for 15 years; my therapists were wonderful, compassionate people who knew a lot about mood disorders, but I struggled with using their practical suggestions in the real world. These folks recognized that I had Asperger's but didn't specialize in autism themselves. I was SURE all those docs were wrong about that-- I don't know anything about programming! I understand sarcasm!-- until I met the person who would go on to be my partner, and she was like, "um, yes, you are not neurotypical."

So I finally got around to being officially diagnosed with ASD and found a therapist who works with teen Aspies (and some adults who need catching up, like me). I actually find myself using techniques he's taught me on a daily basis. I learn something in every session. I don't roll my eyes at therapy any more, and it's because I found someone who speaks the same language.
posted by thetortoise at 5:40 PM on July 25, 2015 [2 favorites]

Response by poster: This is all so useful, thank you!

Sciatrix, your mention of coffee caught me off-guard. I didn't put together, until reading that, other things I've read where people with ADHD will try to self-medicate by getting themselves into danger, or fights--whatever it takes to get the adrenaline going. And of course I didn't need to do that, because for nearly two decades I was awash in panic-driven adrenaline. But I'm not anymore. And here I am drinking two pots of very strong coffee a day just to keep up with work...which isn't really that healthy, and definitely is raising the anxiety level above its normally sorta-high background. The idea of self-medicating without realizing it is very very interesting.

I really appreciate those of you who mentioned needing to find someone who has experience in both these disorders, rather than just the run-of-the-mill therapist. The last time I was in therapy--much of the time I was in therapy--I was on Medicaid. This limited who I could see, but not how often I could see them. Now I'm in the opposite position, with crappy job-provided's not quite as dire as "I only have one shot to get it right!"...but it certainly would be an expensive mistake to see someone who didn't know how to deal with these things, so I'm glad you brought it to my attention.

It's interesting because I think of the aspergerish symptoms as being very pertinent, but I do see the point that people are making, that the attention symptoms may need to be the first to be addressed. They're certainly the ones causing me the most distress at this point, perhaps because unlike a lot of people I can sort of tailor my job to fit my strengths, and am not particularly required to be sociable, but am of course required to concentrate and stay in my seat and all those things that I find harder and harder to do lately.

Ender's Friend, definitely send me a list of books you found helpful, if you have time and inclination to do so. I am extremely book-oriented (well, when I have the concentration for it) so would love to know what you've read that helped.

Anyway, not to threadsit, but I just wanted to say thank you all for your thoughtful replies. I was a little terrified to ask, and this is actually the fourth draft of my thank you note because I'm scared to death I'm writing it offensively somehow, but: thank you!
posted by mittens at 5:39 PM on July 26, 2015 [5 favorites]

I found You Mean I'm Not Lazy, Stupid or Crazy? very helpful. I'd also recommend the ADDitude website - so much great information there.
posted by SisterHavana at 9:02 PM on July 26, 2015 [2 favorites]

Two points to consider here:

To get a diagnosis as an adult, look for someone who has experience in adult diagnosis - someone who deals primarily with children/adolescents is a waste of time.

If you have ASD, you need a therapist who is experienced in dealing with ASD. Your run of the mill therapist will also be a waste of time & money.
posted by HiroProtagonist at 9:35 PM on July 27, 2015 [2 favorites]

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