Because it can be difficult, long, and expensive to get an official autism diagnosis.
Autism is a condition where, if you have a lot of its traits, you can kind of figure out if you have it (though you can also be mistaken.)
But how does that help? Doesn’t a person still have to go to a doctor or something to determine what to do about it?
Only if you’re looking for therapy or some other services. I could have used those when I was a kid to help me adapt and understand what was going on inside my head. But most adults who realize that they’re on the spectrum have no need for those. We’ve adapted, and if you’ve made it into adulthood without a formal diagnosis, you’re higher functioning in most areas. It’s just extremely helpful, and a relief, to understand what’s going on in your brain when for most of your life you’ve felt a bit broken.
Self diagnosis can lead a person to make changes on their own. For example, all my life I had almost-crippling anxiety, but never realized what it was. I never connected the physical symptoms i was experiencing with anxiety. But knowing a bit more about how I’m wired, anxiety is common in people with ASD, especially when routines are broken or changes happen in their lives. Putting it all together (the anxiety, the autism) had helped me cope in certain situations, but it also led me to go on anti-anxiety meds. And that’s been a huge step, even without a formal diagnosis. Autism isn’t a disease to be treated or cured. It’s about figuring out ways of coping and handling outside stimuli and socialization. Some people need more help in these areas than others.
That said, if someone feels like they need help, by all means get the formal diagnosis.
I am very dubious about may aspects of the mental health - and medical - community. But I do not wish to hijack this thread in that direction. I do agree with the sentiment I quoted above. If you are unhappy with some aspect of your life, by all means, see what you can do to change that. Maybe some aspect of your behavior could be attributed to one or more specific diagnoses. But whether it is or not, the therapies and approaches used for those conditions could be helpful. You might also find things that help from self-help books or seminars.
Or maybe - you know - you are just kinda weird in one particular way. In a way I suspect most people are kinda weird in one way or another.
I experience many things similar to what you describe. I am very uncomfortable in many social situations, and often wonder why so much of my species seems to perceive things differently than I do. In recent years, I seem to have started “fidgeting” more than I used to. No related negative I’m aware of - other than that it bugs my wife, so I try not to do it. Maybe I am on the spectrum. Maybe I’m perceiving manifestations of my personality whether innate or learned. Maybe I’m just an asshole (which more than one person has suggested. ;))
But the issue for me is whether I want to try to change my behavior and perceptions, or whether I wish to be more comfortable with who I seem to be. What benefit would a relatively high-functioning person such as myself, the OP, or Happy L derive from a formal diagnosis?
One thing I perceive quite often, however, is people who seem to strongly desire a diagnosis, because that excuses their shortcomings. “It isn’t my fault, it’s my DISABILITY!”
Such attitude is not unique to mental health. Take fibromyalgia. The most prescribed response is increased activity, yet many diagnosed persons become more sedentary and seek enablers - an attitude I believe is encouraged by many on-line “support” communities. And - while perhaps not representative of the mental health profession as a whole, there are SOME care providers whom I suspect over diagnose - for various reasons.
My son, who is clearly on the spectrum - yet employed, married, etc - expressly told me that he NEVER refers to himself as such, because he perceives far too many people in his age group using such diagnoses as excuses and the basis for entitlement. His attitude may not be right for the OP, but it is right for him.
I once when to a neuropsychiatrist to get a diagnosis and treatment plan for my tic disorder. My initial visit was about thirty minutes long and he performed a number of tests on me. Later I received a detailed report from him, and it described me as having Asperger’s Syndrome. It bowled me over, to be honest. Talk about identity crisis. I was angry, frustrated, and then incredibly sad. Every five minutes, I’d go from acceptance to denial and then back to acceptance. I think I spent an entire weekend obsessing over the whole thing, literally thinking about nothing else. However, there was a part of me that was able to see the humor in this. “Girl, you’re up here denying you’re autistic while you’re sitting here acting autistic!”
My therapist was a trip. I happened to see her in the grocery store the day after I got the neuropsych’s report, and I told her that I didn’t know what to think. To my surprise, she cosigned the neuropsych’s assessment but then hastily added that it didn’t matter. And then a couple of weeks later, she said she didn’t think I was autistic. So her wishy-washiness over the whole thing made it easier for me to let the whole thing go. Perhaps if she had made a big deal about it, I would have too.
That was seven years ago. Since that time, my clinical depression has cleared up. Now I have a couple of friends who accept that I’m a little eccentric and they are intelligent enough not to make it a “thing”. I have accomplished some impressive things on the job–accomplishments that have made me see that my quirks aren’t as disadvantageous as I originally thought. I have finally found an effective treatment for my tics. I do believe I am neurologically atypical. Just not autistic. I kind of stay away from situations that remind me of my “atypicalness”, though. Like, I stopped doing group yoga a couple of years ago because I was tired of always being the lone person in the class always dependent on the wall. Yogis might find that pitiable, but what-the-fuck-ever. Big whoop, I don’t like being reminded of my clumsiness. It doesn’t stop me from doing yoga in the privacy of my home and walking six miles a day.
If I were you, I wouldn’t go to a professional to get a formal diagnosis. I would instead go to a professional to get help with your social weaknesses and (if needed) any self-esteem issues. My therapist was able to help me with these things without a formal diagnosis of anything besides depression (though, when I first started seeing her, she did tell me she thought I was “schizoid”. But in retrospect, I don’t think that description is apt either…even though I thought so at the time.)
FloatyGimpy, Parent of an autistic twin and the other with diagnosed anxiety issues chiming in. FWIW. Coincidentally enough, based on my experience, you could be either high functioning or have anxiety issues. But what do I know?
the right professional can probably help pin down whatever non-neurotypical seat you may occupy. With that, there may actually be coping strategies or treatments appropriate to your condition. To say this a different way, coping strategies for autism is different than that of anxiety disorder even the manifested symptoms may be similar. Therefore, getting a solid assessment may actually be helpful.
Personal anecdote, again, my kidlet with anxiety issues literally started to improve by the third weekly anxiety group session. It was sad to learn in the parental group therapy portion just how many people go thru life with anxiety that actually can benefit, or at least be alleviated if not “cured” with not overly involved therapy.
Best of luck
Floaty,
Since I’m not seeing you in person it’s difficult to know and I may be projecting but tell me if what I’m saying rings true: I also had/have similar problems with social interaction and thought I might have some kind of autism. I can’t stand being in nightclubs and many social situations make me anxious. I don’t fit in with most people. Then I remembered there were times when I found it easy to interact. There are strong sensations I enjoy and seek out.
I occurred to me that I wasn’t always like this. When did it change? Around the time my father became alcoholic and my father’s side of the family revealed itself to be very shitty. I think you also have experience with having a shitty family. If people you should be able to trust are randomly shitty to you during your formative years, it can mess you up. If you kept finding snakes under rocks when you were a kid, it’s possible you acquired the overlearned coping mechanism of anticipating snakes under every rock which hampers you in your social interactions as an adult. Anxiety involves high activation of the sympathetic nervous system which can result in being overwhelmed by sensory stimuli. Social anxiety/isolation and hypervigilance fit with autism but also psychologically abusive formative years.
I don’t know if I’m projecting but it’s a possibility to consider. Maybe you’re not broken but rather bent from being banged up. If that’s the case, it’s something you can change over time.
I’m sure, if I had been born 30 years later, that I would’ve been diagnosed as being “on the spectrum”. Back then, I was just a weird kid.
In reflection, I think that mostly I was just a late bloomer and a lot of the weirdness was a result of a certain kind of emotional immaturity. And frankly, I’m glad I was just given space to work it out and I’m glad I had friends that accepted me. I outgrew a lot of it and adapted to the rest. I need more alone time than most people. I overstimulate easily. But I know how to adapt. I know if I do a dinner/ dancing thing with a bunch of friends, I’ll have a good time. And I’ll get home and I’ll be up all night because of the overstimulation. So I make sure to schedule things like this when I can rest alone the next day.
Most of all, I’m glad none of this was medicalized.
Thanks. Fascinating read.
Well my internet diagnosis is you’re autistic. 
You don’t have Asperger’s because that doesn’t exist as a new diagnosis. My diagnosis is ASD 1. And yes, it helped to get a formal diagnosis. It took several hours and two appointments. I think they did the ADOS test, but the neurodevelopmental psychologist who tested me was confident. Lots of background questions are asked. It helps if you have a family member or any school papers. I had some papers from when I was a “high strung” ten year old and a family friend who filled out one questionnaire but I didn’t see what was asked.
Getting diagnosed has changed my life so to me it was totally worth it, even though I was 46. I honestly don’t understand why anyone would NOT want to confirm a diagnosis if they suspected. Even though there are no specialized therapies for autistic adults I feel like I’ve learned a lot from my son’s therapists, both OT and speech. He brings home practice assignments and we work on them together. My biggest issues have always been sensory defensiveness so I’ve learned from his OT about brushing and compression and not feeling ashamed that I can’t wear a bra or socks or tight anything. I used to just feel stupid for the way my body reacted to some things and it didn’t help that other people made fun of me. I jump easy. I don’t like loud music. I am sensitive to bright light. But the other issues have improved so much since I was diagnosed because I stopped masking. I didn’t hold me hands in tight fists to avoid the weird way my fingers move around, which now I understand is a stim, and I see how letting myself do this helps me focus and relax, like when I’m shopping I would be so squeezed shut and anxious I’d cry in my car but since I stopped doing it I’m actually relaxed enough to make conversation. My kids have noticed I talk to people in public a lot more. None of that would have happened if I hadn’t been diagnosed, because before I thought I had a mental illness and the only treatment was pills, and since that didn’t work I thought I was just a lost cause.
Just skimming through the comments is frustrating. I have been dealing with this almost 50 years. It’s not the same as being socially awkward or a “late bloomer”. There is a REAL test, and there are REAL symptoms, they’re just harder to see when someone has been conditioned their whole lives to “be good”. Treatment for autism in children is often barbaric and only addresses behaviors, not the reasons behind them. But it’s effective in that they appear normalized. If your child isn’t banging his head anymore thanks to therapy that means he’s been fixed right? But what caused him to bang his head is still happening, he just has to hold it in if he wants his reward. Of course when he’s older he’ll deal with those old “but you don’t look autistic!” comments. We work SO HARD to even resemble normal because we’re trained to do this, and then people smirk and say “but you’re not REALLY autistic…”
Thank you for the replies and support, especially from those who gave opinions about to or not to seek out a diagnosis. I do want a diagnosis whether it’s a ‘yes’ or ‘no’.
For the last few days at work I’ve been wanting to somehow communicate to the group that I’m very thankful for how kind they’ve all been to me. Today I tried a few times to figure out how to do that or what to say and ultimately I just didn’t know if that’s something that “normal” people do. I don’t know if I’ll come across as a nut job or what. I’m so, so tired of agonizing over every single interaction I have.
I feel like having someone say “yes, you have ASD” will at least help me to relax a bit and give me some understanding of why I am the way I am. Also, a diagnosis will give me access to all sorts of help.
I took this online test. This is my result:
*Your score was 35 out of a possible 50.
Scores in the 33-50 range indicate significant Austistic traits (Autism).*
Have you thought about what you’ll do next?
From personal experience it’s not a typical statement but people will appreciate it more than label you.
As a teenager I often told myself that it was like there was a giant book of how to do social interactions and everyone had it memorized but I couldn’t get my hands on a copy.
Just be aware that diagnoses can be used beneficially and harmfully.
One thing to also note is that it’s not necessarily a bad idea to find similar people. If you’re prone to engaging in offbeat interests with a passion (say, an intense fascination with 1960s American coins), the internet is not a bad place to find fellow enthusiasts. After all, we know this passion for offbeat interests tends to come with a few other quirks, and oddly enough while I am not the most patient person around I’m pretty decent at being very patient with friends who are a bit socially awkward because yeah, I’m still awkward enough myself.
Best wishes!
I’m just throwing this out here because it is a good possibility.
What if a doctor says, “No, you don’t have ASD” or “You’re quirky, but I don’t think I can definitely say you have ASD.” Will you accept that? Or will you feel even more alienated than you already feel?
I went to five neuropsychiatrists to get a diagnosis for my tic disorder before I finally found on one who didn’t think I was making either crazy or suffering from a deadly genetic disorder. The process made me feel so hopeless. However, it was my psychotherapist who encouraged me to keep trying. If I hadn’t had her in my back pocket, I probably would have flung myself off a bridge.
So that’s why I recommend working with a psychotherapist before you step foot into a neurologist/neuropsychiatrist’s office. If you do get a diagnosis and you intend to get professional help to address your more problematic symptoms, you’ll likely end up on psychotherapist’s couch anyway. But not receiving a diagnosis doesn’t mean you don’t need help. You could find a psychotherapist who has lots of experiencing working with people on the spectrum. That way, you wouldn’t need a formal diagnosis for them to know the best way to help you. A good psychotherapist can also refer you to a good neurologist/neuropsychiatrist.
Since you are working with a new group of people and they have been kind to you and you appreciate it then it is absolutely “normal” to tell them that you appreciate their kindness.
Maybe when there is a lull in the conversation among the group or you and another coworker are working on something together you could say something like,
“Hey, I just want to let you guys know that I appreciate you being nice and helpful with my transition into this position,”
or
“Hey, thank you guys for being so nice and helpful to me in this new position. I appreciate it.”
(Maybe someone else here can come up with a better way to say it.)
It will most likely make them smile and feel good about themselves and want to keep being nice to you. And they will appreciate you acknowledging their effort to be nice and helpful towards you.
It would be a win-win for you and them.
If it makes you feel any better, at my work a bunch of people were transferred into my department. One of them posted something in the group communication the other day that said basically how grateful she was to have found such a supportive and helpful group. I have been smiling about that for the last two days. So whether or not it’s “normal,” it should be, and you’ll likely make someone’s day- or week!
Back in 2011 after my rents passed I went into a quick 6 session therapy spurt. At the end of the 2nd meeting, therapist said she thought I was somewhere on the spectrum. Just based on my descriptions of interpersonal relationships and life history. Very informal diagnosis yes, but I researched and a lot of things lined up.
I’m not particularly torn up by it, but it’s nice to perhaps have a reason to my experiences. It has made my wife more empathetic towards me. She realizes that some things are outside my control.
I just have always had issues with communicating with others and misunderstanding people’s motivations. For example, single older lady in front of us for ice cream. She attempts to start chit chat. My wife chats, my body language shuns and ignores her. After the fact, I discuss with my wife and i’m convinced that the lady is extremely rude. Rude because she is inserting herself into convo that she wasn’t invited to. My wife and I could be fighting, or negotiating heavy stuff but she just wants to chat about the weather. To me that was just the height of entitled, me first behavior.
Total opposite interpretation of the “normal” interpretation. and that happens all the time. Just find a way to live with it.
For the little the following is worth …
I’m in the camp that thinks labels are of some but somewhat limited value. If it helps you relax, helps you gain insight into yourself, gets you appropriate support that you might not otherwise get, it is a wonderful thing.
But having known quite a few people with the label I’d like to make this small contribution: if you get the label it is not per se something “wrong” with you. It is something that describes some aspects of you and how you function, something that often includes some things that can be played as your strengths as well as that which gives you difficulty. Being different isn’t easy but it isn’t always “wrong”.
And if your differences in how you process things don’t quite fit a label the same is true. “Yes” or “no” you function in ways that are uniquely you with challenges that are just as real for you whether this is a box you can fit into or not, and strengths that are the flip sides just as much so. Given that your sense of difference interferes with the quality of your life knowing those strengths and weaknesses and how to best work with them both is important with the label or without.
Again, for the little that is worth.
For the little the following is worth …
I’m in the camp that thinks labels are of some but somewhat limited value. If it helps you relax, helps you gain insight into yourself, gets you appropriate support that you might not otherwise get, it is a wonderful thing.
But having known quite a few people with the label I’d like to make this small contribution: if you get the label it is not per se something “wrong” with you. It is something that describes some aspects of you and how you function, something that often includes some things that can be played as your strengths as well as that which gives you difficulty. Being different isn’t easy but it isn’t always “wrong”.
And if your differences in how you process things don’t quite fit a label the same is true. “Yes” or “no” you function in ways that are uniquely you with challenges that are just as real for you whether this is a box you can fit into or not, and strengths that are the flip sides just as much so. Given that your sense of difference interferes with the quality of your life knowing those strengths and weaknesses and how to best work with them both is important with the label or without.
Again, for the little that is worth.