I have a lot of the same things. Depression, anxiety? Check. In particular I’ve always had trouble following conversations, because I have trouble distinguishing consonants. Hearing tests never found anything wrong with my ears, so maybe it’s a processing problem? I’ve described my life as “standing outside at night looking in a window where people are having a party”. I simultaneously crave human interaction, while feeling it too strenuous to maintain.
Perfect analogy.
Omg - yes. I want so badly to be included but I just can’t make it happen.
For a long time I thought that I’m just too ugly and that’s why I can’t seem to fit in. Then I thought maybe I’m just too stupid and that’s why I’m so socially inept.
Most people I communicate with always seem mad at me. They seem to really dislike me. Seriously, most people honestly don’t like me and I don’t know why. I know that everybody else can’t be the problem. I’m the common denominator so I’m the problem. I know that I can take things the wrong way but that’s not the issue (I don’t think) it’s that they just don’t like me.
Right now I’m lucky because there is one person who seeks out my friendship and genuinely enjoys spending time with me and she and I have great conversations. But that definitely is not the norm. Even my own relatives don’t like me. Am I really that offensive and unlikable? 
Just for fun I took the test. I scored 41 out of 50. I think it’s because I don’t have a any love of numbers and I don’t collect things. I MIGHT if I had the money though. I do have a virtual collection in my Second Life inventory though and I think it’s fun to organize my items, sometimes for hours and hours. So maybe I should have said I liked collecting things! 
Some of these questions are hard to answer too, like I really DO like meeting people but I get so anxious and sick over my potential social mistakes I ruin it for myself. I’ve been sick a week over meeting my daughter’s new girlfriend. It went fine although I know I dug marks in to my leg I was so anxious about not “wiggling”. And one time my daughter did make a little joke to remind me and I felt humiliated. I love talking to people too but I stumble so bad in conversations I stay quiet most of the time. When I’m comfortable though I’ll talk a lot but then I have a hard time knowing when to stop. So even with people I’m okay with I stay quiet. I’m much happier writing!
Another fun test gives you a graphic result showing where you lean toward autistic thinking. Aspie Quiz
Oh gosh yes that’s what I’m talking about! I have never once in my life actually felt like a part of a group. I feel like I’m an observer. I always feel alone, like I’m too much in my head and don’t know how to come out. I wanted so badly to meet my daughter’s girlfriend but it was just terrifying and after it was done I needed to be alone a few hours to process it all.
This is one of those comments that frustrates me. “Yet”. As if it’s shocking that an autistic person wouldn’t be employed and married. Okay I get if someone is using something to get some entitlement, but what entitlement do you get when you’re autistic? I don’t know where you live but in the great state of Tennessee autistic adults don’t get SHIT. The only time you do is if you have a co-morbid condition like a disabling developmental disorder. The only thing my KID gets is 1 hour a week of speech therapy. He doesn’t get special consideration at school. He’s expected to do what everyone else does even when it’s harder for him. If someone is using autism as an excuse not to work they don’t know what autism is. There are plenty autistic people working and marrying. That’s a stigma we have to let go of. I hate that your son refuses to acknowledge a fact about himself because other people might use it to get out of working. It is HARD to get that diagnosis as an adult especially in this country. Could it maybe be that those people are actually autistic but they are seen as just looking for an entitlement because they don’t SEEM autistic?
Because I’ve heard a lot of that since I started talking about being formally diagnosed. “You don’t seem autistic to me”. It’s almost as bad as when people claim it’s overdiagnosed now.
If someone suspects they’re autistic but can’t afford to go to a specialist for a diagnosis they can still find a lot of information on ways they can help themselves. Being in my support group that accepts self-diagnosis was probably the most helpful thing I ever did. I didn’t realize how common my quirks and behaviors were with autistic people. I had no idea needle phobias were more common with autistic people. I have learned self-soothing methods that might not help people who aren’t autistic. I did all that before I got that formal diagnosis.
Autism in adults is really hard to diagnose anyway because there’s no blood test or scan and they wanted me to have records from school and a family member who knew me as a child to fill out a questionnaire. Not everyone has access to all that. So if you just suspect you’re autistic you can start reading up on ways to cope, because for adults there’s really not much along the lines of support. I was offered CBT to “help with stimming” but my problem wasn’t stimming, it was the shame I felt thanks to 40 years of conditioning me to think it was something I shouldn’t be doing.
I get the point you’re making, but it is true that a diagnosis of some type is needed to get on a disability. Simply having a diagnosis doesn’t entitle one to services, but a person may still seek one (or use one) for that purpose anyway. Hell, if I was unemployed and not having any success getting a job after years of looking, I would try to get disability benefits too despite knowing I would likely be denied. It would be stupid not to try if I have exhausted all other avenues.
At any rate, it is undeniably true that a diagnosis carries with it social gravitas even if it doesn’t translate into a paycheck from the government. I work with a big jerk who frequently tells people that he might be on the spectrum. Maybe he is (I suspect he is), but it is kind of hard not to think he’s using his self-diagnosis as a excuse for his jerkitude. A person may also use their diagnosis to explain to family and friends why they haven’t “launched” yet, so as to spare themselves from harsh criticism that an otherwise “typical” person might get. Again, I don’t think there’s anything wrong with this. A diagnosis can be used as an excuse, but it can also be used as an explanation. So where “government entitlement” fails, there’s always “social entitlement.”
Disability is a subjective thing. Perhaps Dinsdale’s son would feel quite differently about his diagnosis if he had been born poor and thus had been unable to attend good schools and had parents who were unwilling/unable to help him reach his full potential. I think a lot of people with “bootstrap” mentalities are blinded by their privilege. Because they had a strong support network behind them, they don’t feel impeded in life and thus no one else should either. It’s a bunch of garbage, but I can see how someone can fall into this pattern of thinking if they aren’t careful.
This I don’t get at all.
Dinsdale’s son apparently has a good enough understanding of how to manage his personal strengths and weaknesses to function at the level he is satisfied with. He does not feel taking on the label would help him in any way and doesn’t want to have that be part of his identity. You may not think his reason is a good one and you find value in the label he does not, but why be judgmental of his decisions about what is right for him?
Interesting point. But what if you really DON’T have the diagnosable condition, the first 5 doctors were right, and the 6th is just someone who is willing to bill your insurance by giving you the answers you want? Just observing a possibility my cynical self perceives with some diagnoses.
I would also urge people to consider the possibility - however small - that their self perception might affect the manner in which they respond to self-diagnosing on-line “tests.”
Yes, in my work I deal with people who are seeking cash benefits related to their physical and mental/emotional medically determinable impairments. But rather than simply cash benefits or eligibility for medical insurance, as you observe, monstro at least some people rely on relatively dubious medical diagnoses to “excuse” various things. “It’s not MY fault, it is my (fill in the blank).” “Secondary gain” can be a powerful factor. Yes, comfort can be found in numbers of similarly affected, but you might want to consider the motivations of group members.
Sorry you don’t like my choice of the word “yet,” rushgeekgirl. I doubt many of us are perfect in any way. Yet, we all achieve/fail to whatever extent we do despite our advantages/disadvantages. Great - go out and see if you can get someone with initials after their name to assign you a specific diagnosis. Then what are you going to do? THAT - to me - is the important part.
I know little about autism (though I exhibit a few symptoms sometimes, then I noticed everyone does, so I brought it up at work and said “Everyone’s on the spectrum somewhere… Come to think of it, everyone’s on every spectrum somewhere.”). But I do know Attention Deficit, and I could share a few things that might help.
I was frustrated that there isn’t an easy, quick test to determine where a patient’s at. My doctor said “Doesn’t matter, you’ve got the symptoms so you need to compensate for them.” For me, it’s distractibility/memory: so I HAVE to write everything down, set calendar events with alarms… and realize that I won’t remember someone’s name the next time I see them.
Which is where the most important thing comes in: Be honest. Tell people what your issues are. So I tell my students not to take it personally, but names are really hard for me to retain.
I have a friend who almost immediately tells people he has OCD and tells them a funny story about something he does. And I worked with a guy on a conference this summer, and the first thing he said? “Oh, a word of warning: Y’know all those people who say they have ADHD? Well, I have an actual diagnosis. So don’t be surprised if I go off on a weird tangent and forget to do something important. You have my permission to ask me where things are at, and slap me if I’m getting weird.”
That helped so much! It meant I could say “Okay, ADHD Poster Boy, we need you to focus for ten minutes and email each of the speakers. Stop building the ultimate treehouse in your mind, and do it right now. I’ll wait.”
I’m betting your bakery coworkers would much rather you be honest with them and say “So sometimes I do this drumming thing, and I’ll get upset if ______…” It’s exhausting for them to be wondering “What’s up with Floaty? Is he having a stroke? Should I watch him in case he has a seizure? I’m not qualified for this.” Much easier if they can just dismiss your behavior as “Oh, he’s gettin’ aspy again. Nothing to worry about.”
Because, and believe this even if it’s hard, everyone is weird. Just in different ways.
In my case, none of them told me I didn’t have a diagnosable condition. They just gave me diagnoses that didn’t feel right and that involved prescibed medications with side effects that were worse than my symptoms. If the first five docs had come to the same conclusion, that would have been one thing. But they came up with different diagnoses. And only the sixth one thought to ask me probing questions about how I was like as a kid. I think that made all the difference.
And as I said, I had resigned myself to never getting a conclusive answer, and I just kept working with my therapist to treat my depresssion and social isolation. But we both knew that my emotional distress was directly tied to the distress over my tics. All the relaxation techniques, yoga, EMR, role-playing, and homework assignments weren’t addressing the 800lb gorilla sitting in the room. So I knew I had to keep looking for a medical answer.
Maybe it is because I had such crappy experience that I don’t blame people for self-diagnosing. I was fortunate to have good insurance and a job with flexible scheduling; if neither of those things had been in play, I would likely be someone with a long list of (likely inaccurate) diagnoses. But my experience has also taught me that there is some value in getting a formal diagnosis even if it doesn’t point to a clear treatment plan. Just having a doc tell me that my tics made sense given my other neurological signs and childhood/genetic history gave me some comfort. This was a relief because one doc had led me to believe that I was suffering from a serious neurodegenative disease! So just knowing that tics were normal for someone like me gave me permission to accept them so I could stop viewing them as indicia of disease. I don’t think it was a coincidence that my depression started getting better shortly after that.
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My first husband is somewhere on the spectrum and back in the day when there was such a thing he fit the Asperger’s DSM criteria to a T. He was tested as a child and they said “not autistic” but then again things were not so well understood back then (he’s 63 now.) He’s also bipolar I and I’ll tell you what, the bipolar was a lot harder to deal with than the ASD. He’s on lithium now for the bipolar and has been for decades but the ASD traits are just the same as always.
And here’s the thing–I’m pretty neurotypical myself (have PTSD and anxiety/depression but most of it is trauma induced) and I find high functioning autistic people to be freaking awesome. I love that they will just say what’s on their minds and ask the questions you’re not “supposed” to ask and I can just talk to them without all the hurt feefees and righteous indignation and overblown offense you get with so-called “polite” people. Midwestern nice just isn’t, and neither is Southern or Wisconsin nice–it’s just veiled meanness and fuck that.
Even the stimming and repetitive behaviors are nowhere near as annoying as some of the other social shit I’m expected to put up with. Seriously, put me in a room with a bunch of ASD people and Tourette’s people and I’ll have a fucking awesome time. So basically what I’m saying is that all those things autistic people are worried about like being “too weird” are actually rather beneficial when dealing with certain other neurotypical people. Just like anyone else, it’s all about finding your tribe.
I’ve often considered the analogy of autism vs neurotypical as being much like being plunked down some place where everyone else grew up speaking the language, and you don’t know it at all - if you manage to learn it, you never 100% master it and always struggle with it.
My son is high-functioning autistic. My daughter thinks she may be on the spectrum also (she has a lot of other mental health issues). I don’t recall her ever being oversensitive to sounds etc. like her brother is, but neither has ever made friends. My husband and I both have Aspie-like tendencies but we’re pretty functional… though there are certainly many times where I don’t “speak the language”.
I’m a bit hypersensitive to sounds myself. I’ve never been able to tolerate loud music. A sudden loud noise (dropped dish, for example) can set off a brief panic reaction in me. My son’s hypersensitivity has improved since he was very young; at one point he freaked badly enough when a store’s “someone opened the wrong door” alarm went off that I had to take him outside, and we couldn’t use the food processor with him in the room as he would literally shriek in pain. Now he uses the thing himself.
There are therapies that can help that aspect of it, as I understand. It’s never been bothersome enough to me to require doing anything.
I remember one time, a couple years after my son was diagnosed, I got really, really excited about something or other. And I realized I was flapping my hands - a VERY typical behavior for someone with autism. I snickered. To the best of my knowledge, I’ve never done it other than the one time.
Whether or not you pursue diagnosis (and it sounds like you plan to), reading about it online may well help you with coping mechanisms.
Do you have any other sensory issues, such as textures / fabrics / light / smells? A lot of kids on the spectrum have to have tags cut out of their clothes, and get very upset at needing to touch certain textures (I personally actively dislike lotions etc though I’ve gotten more inured to them and can use them if needed; one time when I tried forcing myself to eat regular yogurt, I nearly hurled just stirring it in the cup).
As Emily G said, it can be an alternative if you don’t have the resources to seek a formal diagnosis.
And really, who knows you better than you? (I’ve personally diagnosed several issues in myself and family members, which were later borne out when people with medical training were consulted).
Where it’s useful: learning to understand possible reasons for why you feel, react and behave in certain ways. Learning how to deal with those and seek help as appropriate.
Where it’s NOT useful: well, you can’t get job accommodations etc. if you just go to an employer and say “I’ve got XYZ, I need a different workstation” or whatever. And if you need intervention / therapy beyond what reading some web pages can do, then you need a real doctor to diagnose you.
Like I said, I’ve got some definite Aspie-like tendencies (and yes, I know that’s not an official dx anymore, but it’s a useful term to distinguish someone who’s fairly functional, like me, from “Rainman”). I’ve never sought a formal diagnosis, but it does help me understand myself better. There were an awful lot of lightbulb moments when our son was going through his evaluations at age 3, as in “Hmmm, that sounds familiar. Sure explains a lot!!”.
As I understand it, Asperger’s was broadly speaking based on normal enough language acquisition as a child versus Autism where language was significantly on completely delayed. Now it is just one broad spectrum but I believe the old school major deliniation point was speech.
For example, My ASD youngest child barely learned any words until 5 and a half years old. From about 4, she had a vocabulary of about 20 words, and if she acquired a new word, would lose an earlier one, and stay at about a 20 word vocabulary. Echolalia in spades. She only started to truly acquire verbal skills at 5 and a half, after we moved to the US. Part of it was all the new stimulation. At 6 we started speech therapy with a wonderful woman that really knew how to reach my daughter. The first speech therapy session, I learned about 5 tips and tricks for how to help my daughter. Now at 14, she can hold a simple conversation, understands most conversation, can follow 2 step directions, can express basic needs and wants, tries to make conversation but she is far from neurotypical. One day at a time.
Maybe a bit off-topic, but I’d just like to say - SmartAleq, thank you for this post. We autistic people are often considered rude, because we say what’s on our minds, or we’re blunt about things, or don’t have the right tone of voice. I’m happy about how accepting you are.
Floatygimpy, from what you’ve told us about struggling to connect with people, and about people at work being nice to you and one of them suggesting you might have Asperger’s, it sounds like you’ve finally found a group of people who “get” you and like you for who you are. If you’re moved to express your gratitude for their kindness, I would encourage you to do so, and not worry about whether that’s “normal,” because they don’t need you to be normal. I think your thanks would be received in the spirit it was intended, and it would probably make everyone’s day to hear it. You seem like a really sweet person, and I hope your co-workers continue to treat you well.