Asperger's, people, and me
December 20, 2015 8:51 AM   Subscribe

After reading endless books and blogs, I'm fairly certain I'm somewhere on the autism spectrum--specifically, that I have what used to be called Asperger's syndrome. I have some questions about whether it's worth it to seek a formal diagnosis, as well as well as whether there's any worthwhile type of therapy (or anything else) that might lead to improved work prospects and social interaction.

Posts such as these (Autism's Lost Generation, The role of sex and gender in autism) have really struck a chord. Life has been one long struggle to keep up with social interaction, and I've always sensed that it goes deeper than simple introversion or shyness. This comment from the latter thread in particular resonated with me, as a female-bodied person. I can sometimes, if I'm feeling particularly spry, successfully pretend to be normal for hours at a time, but I always get tired and start to slip. I also have a tendency to inadvertently offend people, and have been called--as an adult, by other adults--"weird," "slow," and "backwards."

Other things I struggle with: executive function, sensory sensitivities and overload, eye contact, biting/chewing hands and cuticles, total meltdowns when overloaded. I've been diagnosed with ADHD, though medications have never helped and have actually made me feel worse, so I'm wondering if that's a misdiagnosis.

Work has been a challenge. I've stayed hunkered down in a job that's a poor fit because it's a freakin' job that pays money, which is hard to come by for even neurotypical people. However, everything about getting a new job seems insurmountable: the interview process is where I usually crash and burn; if I make it beyond that there's always the moment it starts to dawn on my new coworkers that I'm "weird" and the shunning process begins; and finally, realizing that I'm once again in a job that calls upon social and cognitive resources that I don't have--or that I can fake, but only intermittently and resulting in exhaustion and eventual shutting down.

Friendships are another area where I flounder. I do have one good friend who lives out of town, but when they visit I have to force myself to hang out with them, due to the disruption in my routine. The idea of having a group of female friends is laughably alien to me. Typically I am friends with mostly male uber-nerds who are extremely nice, or else abusive and see me as an easy target. In the last ten years I've done the slow fade from a number of friendships that fit the latter category, and suddenly find myself with almost no friends.

Lastly, I'll mention that I have stringent requirements for extended alone and quiet time, healthy food, exercise and sleep. If I stumble in any one of these areas my whole life falls apart. This is just one other thing that is isolating (I can't blow any one of these off by spontaneously carousing for a weekend, for example, or I will pay the price by later having a complete, screaming-in-the-pillow-until-I-lose-my-voice meltdown.)

I could go on, but my main point is that my life as it currently stands is pretty lonely and isolated. Would seeking a formal diagnosis help? I sort of began that process recently and found it overwhelming, but I'm wondering if it would be worthwhile to carry on. Is there therapy for people with Asperger's? Would anything get better? Is there anything I could do differently in my life to make it more Asperger's friendly? How can I feel less down on myself for not being the nice, normal person I want to be?

I should mention that was seeing a therapist for a while who was simply the most skilled, intelligent, empathetic therapist I've ever seen. We spent much time going over the indignities of my childhood so I could grieve them, which was freeing in a sense, but part of me always felt like I had some essential difference that was not being addressed by this therapy. I want to go back to this therapist just because it was wonderful to feel "heard" like that, but I doubted it was helping my day-to-day functioning. Are there therapies for autistic people that go beyond teaching basic social skills, which I feel like I already grasp (if don't always successfully pull off?)
posted by whistle pig to Human Relations (12 answers total) 34 users marked this as a favorite
You may not have Asperger's. What you have described could be bi-polar disorder, which can respond well to medication, or something else.

Therapists that encourage you to talk about your childhood are a waste of time. You are an adult now, find one that can help you move forward in your life. Being heard might feel good but it won't help you find happiness. Some therapists will go places with you to help you learn to socialize. Look for one of them. Go to a psychiatrists for a diagnoses, and then ask for a referral for a therapist.

There is more to life than what you are living. Reach for it.
posted by myselfasme at 9:08 AM on December 20, 2015

Um your symptoms(?) are non typical, so please take every attempt at a diagnosis here with a rain of salt.

Having said that, i think you're just a highly sensitive person. Are you highly sensitive to stimuli? Do you have a lot of nervous energy? I too am like this.

And then there's the social component. It seems you find social interactions draining. Not all aspies face this... that's more introversion (which is where you're overly stimulated by social interactions).

The only thing that's typical is you inadvertently offend people. I would suggest you read more into this, as even professionals are not in touch with the latest research and such.

How about getting in touch with the aspie community? (Sorry typing on phone so it's easier to just type that). That would probably confirm your suspicion, or not.

There are ways to learn social etiquette. But also find out if aside from professional hindrances you find the mainstream social life fulfilling.
posted by kinoeye at 9:55 AM on December 20, 2015

I asked a very similar question a few weeks ago. While I can't answer yours, really, I can talk about how the answers to my question helped me understand what circumstances would have to exist for me to get a diagnosis and be treated.

I learned, in thinking through my own question, in reading and reading and reading, there are really three questions, in the framework I'm using to think about it. First is, what is your diagnosis? Second is, do treatments exist? Third, are treatments realistically reachable?

I picture diagnosis being on some long spectrum. On one side is the sort of self-tagging that goes on, "oh, I'm a little bit aspergerish haha," that you see a lot of online, where people excuse poor social skills with a tag. And then way on the other side are the people who have gone through the lots and lots of testing required to have an official diagnosis. And to get to that other side can be quite a process...lengthy, time-consuming, expensive. I realized I didn't have the insurance, the ready money, or the nearby expertise of a practitioner, that could help me get a diagnosis. So I'm going to fall into the self-tagger category, no matter what. But I try to do a good bit of reading and self-examination to the extent I can, to make sure I am not simply trying to give myself an excuse for why my relationships don't work. And in the absence of a diagnosis or therapy, that continued reading is very eye-opening. I begin to see reasons for why certain conversations, certain sounds, certain places and circumstances can cause so much more stress than they reasonably should. I begin to see why everyone is mad at me for demanding a rigid plan for the day...and why I get so sad and upset and lost-feeling when that plan is delayed or broken. It's not as good as having someone professional to talk to about it, but insight is insight.

The second question is more simple. Do treatments exist? Of course they do. While I wasn't able to finish Tony Attwood's book "The Complete Guide to Asperger's Syndrome" (too repetitive, too sad-making, felt too hopeless to continue), the half I did read contained quite a bit of thought on the way CBT can work for autism, as well as the creation of story scenarios to sort of role-play and practice. Because I am a sucker for mindfulness, I often visit this site as well to look for new papers on the subject.

The third is, for me, the saddest. There are simply no local practitioners who can help me, and my insurance seems designed to cover as little as possible. (Oh for the days when I was back on much therapy! Free!) It does sound as though you want to find a specialist, if I'm understanding my reading, and the comment of others, correctly. But the guy you went to, who helped you contextualize your childhood...why not go back? Why not say, let's try contextualizing things this way, and he could at least point you to a professional with a more autistic-treating slant, if necessary? Or he could say, "in my experience you don't have this or that symptom so perhaps we should be looking at this other diagnosis instead." But the idea of having a therapist you were actually working well with, is enormously exciting, and I definitely encourage you to at least have the conversation with him.

Anyway, I am not sure I have added anything to the conversation, aside from basically a "me too," but I think you are on the right track, and I hope you find the answers that will help.
posted by mittens at 9:56 AM on December 20, 2015 [11 favorites]

I have Asperger's and you sound a lot like me. I don't know where you are, but yes, there are therapists who work specifically with adults who have ASD; I go to one. They're not super-common outside major metropolitan areas, and many don't take insurance, but in my own experience finding one (who accepts payment on a sliding scale) was entirely worth it. I went to therapists for years and years before that and my experience was like yours: they were good, kind people who couldn't always help with my specific problems that much, and sometimes it was like we spoke different languages. My therapist helps me with managing depression, anxiety, executive function, sleep problems, dealing with complex social situations, figuring out how to say no to people, dealing with sensory sensitivities on a daily basis, you name it.

An adult ASD diagnosis is not like a psychiatric diagnosis; you have to go to the right kind of specialist (ones who evaluate adults can be hard to find) and there are lots of tests and inventories. It should be standardized but it really isn't, and some practitioners seem like they're less familiar with the criteria than you are. I went through the process myself and while I felt it was worth it just to feel like I was validated, I would not recommend it to someone who was under significant mental or financial stress. Look for therapists or organizations that offer support to people with ASD first; they're not going to require a diagnosis just to talk to you. At least go back to your old therapist for now until you have a plan.

Resources: Tony Attwood's complete guide is definitely the best thing I have read and I refer to it frequently. There are several books on women with Asperger's/autism, and while looking into them is certainly worthwhile, there isn't one out now I'd recommend as a sole authoritative resource.

Yes, absolutely, things can get better, 100%. They did for me. It is a slow process but you're through the hardest part. It involves a lot of self-acceptance; things get easier when you can meet yourself where you are. Feel free to me-mail me if you have specific questions.
posted by thetortoise at 9:57 AM on December 20, 2015 [11 favorites]

I was just recently diagnosed and will be meeting with a specialist soon. Like you, I was aware something was off and that my social life suffered chronically despite being treated for a wide variety of disorders. My therapist (who was treating me for PTSD and bipolar disorder) was actually the one to suggest the possibility and to recommend a formal diagnosis after she noticed an immediate and profound decline in progress and my mental health following a huge shift in my social life. It's been difficult to accept but at the same time knowing has given me a protective shield that I didn't have before against not only the potentially exploitive and abusive behaviors of others but also to protect others from my cruelty and meltdowns. It has also allowed me to return to focusing on what I love and what brings me joy (my obsessions, nature, etc.) after almost 20 years of chronic depression caused by my attempts to fake my way through the world as a neurotypical woman. So yes. Absolutely get that diagnosis. And don't let them brush you off either...we're so good at masking our disorder that we even fool ourselves sometimes.
posted by Young Kullervo at 10:43 AM on December 20, 2015 [5 favorites]

As a woman with ASD, I found Attwood's book to be more than a little useless for any real constructive advice. In terms of resources, I've often found the stuff that's not aimed at people who are autistic are far more useful, which can often be incredibly frustrating. (As someone with an advanced degree, I have a pretty high threshold regarding how qualified so-called professionals have to be before I will take their advice. Self help guides for people with ASD -- unlike those I have read for pretty much anything else-- rarely cross that line.)

That said, if you're lonely, my best suggestion is to make social interaction part of your daily routine. Find a club-I often recommend knitting, although geeky groups (book clubs, the SCA, etc) often have a very high tolerance for social ineptitude. If it's part of your weeky routine, I think it's far less likely to be stressful, especially if you're initially only going for an hour or two per week or even per month.

Social skills are a lot like anything else: the more you practice them, the better you get, and if you don't practice them for a while, you get a lot worse. It sounds like you're actually interested in being more social, which I think is often the first step, particularly if you're willing to put effort into learning what you need to acquire.
posted by steady-state strawberry at 10:43 AM on December 20, 2015 [6 favorites]

Are you in New York City by any chance? There is a new place for women on the spectrum to hang out called Felicity House, which looks amazing. You do need to have a diagnosis, but they will help you find someone who would do it cheaply, so if you are here, it might make sense.

I have to say, your symptoms do not sound at all like bipolar to me— nor do they seem atypical for ASD, particularly in females.

The three categories of ASD symptoms are sensory issues, repetitive behavior & social difficulties, all of which you seem to meet.

Also, diagnosis is really an art more than a science— if you feel that it fits you better, you almost certainly know your own experience better than a bunch of tests and a person's clinical opinion, which, given all of the diagnoses most autistic women seem to collect, is clearly a very flawed and subjective process. The NIMH wants to phase out DSM diagnoses in research because they are so flawed, but the new system is nowhere near ready for prime time so we're stuck with DSM for a while longer.
posted by Maias at 12:50 PM on December 20, 2015 [8 favorites]

I self-diagnosed as autistic almost a year ago and have chosen not to get a formal diagnosis. Here is what I suggest most new-to-their-diagnosis autistic folks do (using autistic to mean the whole spectrum).

1. Seek out the voices of autistic adults. There are books like Loud Hands, blogs like Musings of an Aspie, advocacy groups like ASAN (Autistic Self-Advocacy Network), and communities on social media sites (I like Tumblr so that's what I'm most familiar with). I had spent my entire life wondering wtf was wrong with me and being told that I was exaggerating/being inconvenient/should just suck it up so the validation I got from these sources was wonderful and oh so needed.

2. Start figuring out your triggers and traits. Reading about the experiences of other autistic folks is super helpful for this. I had absolutely no idea I had an auditory processing disorder or that I had non-verbal episodes until I read what they felt like from inside. Learning that yes these experiences are real, that others have them too, and that no I'm not secretly dying was really soothing. Think of this as a life-long cataloguing process. (Special mention of alexithymia as a frequently autistic thing because wow that explained so much for me and I wish more people knew about it.)

3. Build a set of coping skills. Figure out what you can work through, what you need to work around, and what you need to avoid. This is usually where stimming comes in (either to soothe emotions during a stressful thing or as part of your downtime). Autistic people are frequently discouraged from self-soothing in ways that work best for us so we tend to handle stress poorly. CBT might also work for you here, especially to end the "I wish I was normal" tailspins when facing barriers.

4. You are not broken, you just work differently. People who treat you like crap are doing so because they are jerks/abusers, not because you haven't earned their kindness. You deserve kindness and compassion just as you are. You've already started on this path by cutting out toxic friends. I wish I could say that new, better friends will take their place, but sadly that hasn't been the case for me. Set boundaries, find people who do not make you feel like you need to earn their friendship, fill the remaining loneliness with distractions and interests.

Unfortunately I can't provide advice on job searching or making friends with allistics because both of these are extremely ableist environments that I still fail at (interview advice frequently feels like the phrase "don't be autistic" repeated over and over). If your job is tolerable and pays the bills, it might be worth shelving that worry for later.

I can tell you that I have become a much happier person since I have given myself permission to fail at reaching neurotypical standards of behaviour and success. I have a few friends that make me feel heard, who are willing to accommodate me in so many ways, who help me take care of myself even when it's inconvenient. I've tweaked my home environment to have as little sensory triggers as possible (no loud alarms ever!! no bright colours! no strong smells!). I organize my days into "chunks" and always leave one empty so that I can deal with things that come up. I plan things days in advance whenever I can. I very rarely go out but that's mostly because I find it miserable. My autism generally feels "managed" and I don't go into as many self-hate spirals as before.

Ask yourself what makes you happy. Figure out and listen to your limits. It may not look like the life you were promised or like what you were told success looks like. That's OK. Build what Asperger's friendly success looks like for you.

Feel free to memail me if you want to talk (this invitation extends to folks other than OP as well).
posted by buteo at 1:12 PM on December 20, 2015 [28 favorites]

Oh-- this is very silly, but since you asked about how to not be down on yourself: I am a media person, always have been, so I identify characters in fiction who have what I would consider to be autistic traits and think about how those traits contribute to making them interesting and valuable. For whatever reason, this helps me more than real-world role models. I also spend time on narrative therapy, which can be done on your own, through journaling. I write about difficult and painful periods of my life, just trying to retell the story. As I've progressed in therapy, the newer versions have gotten kinder and less judgmental, and that shift in perception has a subtle but real effect on how I think of myself going forward.
posted by thetortoise at 4:20 PM on December 20, 2015 [5 favorites]

Thank you all so much for these thoughtful responses.
posted by whistle pig at 5:19 PM on December 20, 2015

I was diagnosed with Asperger's as an 11-year-old and I can recognise so much of myself in your question. However, this was back during a period in the 90s where it felt like they were diagnosing people in the UK left, right and centre with various autistic spectrum disorders and a lot of the methods by which I was diagnosed have since been discredited somewhat, so I tend to take my own diagnosis with a pinch of salt. I think back then, they were struggling to deal with the idea that there isn't just one single type of human brain and it was a convenient label to slap on people who didn't behave in a certain expected way given a certain stimulus.

You don't mention what kind of job you do. I've always had more success in jobs that are outside of the traditional office environment, and the least successful jobs have always been Mon-Fri 9-5 office jobs with little in the way of aims and goals other than "show up in a noisy, crowded, busy office and do admin-y stuff". That's something it's taken me quite a long time to work out and I'm still on the pathway to getting to where I want to be work-wise. It's very, very much worth examining your current work situation and taking a look at what sort of environment you feel you'd thrive (or even just survive) in and seeking out a pathway to getting there. I too have spent years doing the "this is a job that pays money and I must cling to it by my fingernails even when it's making me mentally ill" thing, particularly since a great proportion of my working life so far has been in recession conditions, and I'm just now learning not to do that as our economy improves.

The things people are saying about giving yourself permission to be neuro-atypical are excellent. Particularly in the workplace, and particularly particularly in an office environment, we're held to such high standards and expected to be so tolerant of all sorts of shit that it's incredibly easy to beat yourself up about being the person who heads straight home on a Friday evening instead of going out for drinks with the team, or who deals with things in a methodical and logical way which can often look 'slow' to others. I'm totally with you on the need to spend time alone - a typical office workday and commute leaves me in need of quite a long period of relaxation and recovery in the evenings where I don't actually do a great deal and I feel stressed and worried if I have to leave late for whatever reason. I too sometimes just totally melt down, overwhelmed by the overstimulating life that everyone else seems to tolerate so well and have to scream - you aren't alone in that and it makes me feel a bit better about it to know that I'm not, from reading your question.

It isn't generally good for your career in traditional terms to be that one person who goes home on Friday nights instead of going out schmoozing and networking - the world of work is very focused on neurotypical people in that respect - but one of the great things about life is that you get to decide what success looks and feels like to you. For some people, that's the office promotion, the big house in the city, the hot partner, the BMW, the non-stop working and social life. For me, it's a quiet, peaceful place to live and a life focused on living gently in the world. So my biggest piece of advice would be something I should work a lot more on myself - don't be railroaded. Figure out what you want - I personally methodically put together a list of pro's and con's and factors I wanted and didn't want in my life. You might use a different method. But however you do it, live your own life, on your own terms.
posted by winterhill at 1:04 AM on December 21, 2015 [8 favorites]

Yes, get a disgnosis. You will then have answers.

You may be able to do carousing if you plan it. Realistically most people have to plan their carousing if they want to stay stable. Make sure you have trusted, preferably female friends with you when you do this, don't do it among strangers. If you have to make new friends first then so be it. Also, don't do this in a work-related situation.
posted by tel3path at 3:01 AM on December 21, 2015

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