A question for the non/self diagnosed

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Do you ever consider you may be selectively looking for facts to prove ASD/NVLD to yourself, and ignoring contrary evidence ?
I do wonder,personally speaking, whether it's about the need to find something that explains how and who you are.

I always assumed that for most people it *was* about the need to explain why/who we are. I guess not...?


This is why I've always felt too shy/guilty to post much.

I'm glad I never tried too hard to fit in here. I would hate to be seen as that faker "wannabe" who only thinks she belongs here but doesn't.

Everybody's welcome on WP, even if it turns out one is not autistic.

For me identifying a similarity between me and diagnosed people on the spectrum has allowed me to access ideas for coping with difficulties we have in common.

When I was a kid, I used to be so afraid of the loud flushing of public restrooms at my school that I would pee my pants trying to hold it in all day. I love music, but can't handle going to shows. Too loud. As an adult I was watching a reality TV show on TLC one day when I saw one of the kids putting her hands on her ears in response to her sibling yelling. They explained that autistic people are often very sound sensitive, and then helped the girl with coping strategies for this problem. My mind was blown!

I don't care if I meet the DSM criteria for autism spectrum disorder. All I care about is how do deal with how I am as best as I can.

For me it fits so well. If there is contrary evidence, I don't know what it would be. I don't think a diagnosis will change things, and I don't think it should. I now identify as an Aspie, whether some other human objectively thinks I am or not. It makes sense to me, it has brought me a great deal of understanding and peace. I may or may not seek diagnosis. I find the only motivation for that has been to shut others up who might not believe me.

The self diagnosed are a spectrum of people. Some decide they are autistic based on reading the Aspergers Wikipedia article, others put in months of research and are well aware of what confirmation bias is. I find most of the self diagnosed here belong in the latter catagory. I have been told that many on Tumbler belong in the former catagory.

I do find the atmosphere of suspicion very harmful. It has gotten to the point where even proffessionaly diagnosed people are wondering if they are frauds. In my opinion be it lack of confidence or "black and white" thinking autistic people are particually vulnarable to suggestions or accusations they are not autistic. I think the damage done by the atmosphere of suspicion is more then the damage done by non autistic people fooling themselves and others.

I just don't know. I swing from a degree of certainty to a degree of uncertainty ,all the time looking for something that explains me and where I belong/fit in.
The primary thing with me is social interaction difficulties that are long standing ie have had few friends over the course of my 60 years. Social skills were described a few years ago by a pdoc as very poor. I am also not good with change but don't see myself as having the "Stereotyped or repetitive motor movements, use of objects, or speech "
I am not sure my years of posting articles ,mostly mental health or politics related , and checking my rss feeds and twitter for stuff umpteen times a day would exactly count as " Highly restricted, fixated interests that are abnormal in intensity or focus ".
I guess the nearest I've got to explaining things is NVLD ,and to a lesser degree ASD.
One thing I do know is that as a child/teenager I was quite different from my peers. As a child it wasn't really much of an issue ,but when I got to British public school as a teenager it resulted in a lot of verbal bullying and peer rejection.
Although people don't come out and say it to my face I think I'm seen as being a bit socially odd/awkward.

I found this when having concerns for my daughter, but there was more to it, however, i don't know how to put it, i'm gone off the general idea of it all because it's other, more the old aspergers and a suspection of adhd, which is very opposite to the moving of the goalposts we see happening (i think).
[as a newborn she'd be frightened when picked up, i suspected something autistic, later she'd be very advanced, too much actually, but it all came apart later with some fear for schizophreny but we got past that hurdle, kow]

I swing wildly back and forth between "look how autistic I'm acting today" and "I'm just an introvert, I'm making this all up." It turns into perseveration, really; an anxiety-fueled loop of thoughts and feelings, which I can only get rid of by practicing mindfulness or otherwise distracting myself.

I'm waiting on doctors appointments now, but the diagnosis process seems agonizingly slow. I started with a new doctor (since I didn't have one) and asked for a referral, just last week. (Only last week, crap, it feels like twice as long!) He said he didn't think I had autism, he had relatives with autistic children, and I could converse back and forth with him. It was kind of devastating, in the car afterward when I let my guard down. I finally opened up to someone, someone who had my name and my freaking medical file in his hands, and he kind of did exactly what I'd been dreading. But he referred me to the clinic's social worker for a follow-up. And so, three more weeks of agonizing over the DSM criteria. And then maybe I'll actually get referred for an assessment.

The problem I'm having is objectivity. I sure as hell don't want to tell my mom, "Hey, you know how you homeschooled me and accepted me for who I am? Well, I think I have aspergers and you totally missed it." (And here is my annotated DSM photocopy--um, are you crying? Was it something I said?)
I still can't think of a good way to start that conversation, and I've been thinking for months.

The diagnostic criteria are just so vague. I could live with being either "on the spectrum" or "not on the spectrum," but being stuck in a grey area in between is hellish. It all depends on the subjective judgement of other people. And if I think that too hard, suddenly it's really hard to trust anyone, because they can just say I look insane or I don't, and literally change my life. Thinking that makes me want to cry; I used to think the world had rules, and that the rules were based on truth. But there's a failure rate. It makes me scared to look for help, and it gives me a death grip on my social masks.

I feel a lot better about my judgements of myself when I walk through the DSM entry rephrasing the symptoms as questions. "Do you ever struggle to keep up with conversations? All the time? Okay. Do you ever stim? When you're stressed? Okay. Do you perseverate? Oh, you're doing that now? Okay."

The really hard question is, are my difficulties clinically significant? I feel socially unskilled, mentally disorganized, and isolated, but am I diagnosable? I seriously don't know. I used to be certain of my independence, that if I would just move out of my parents' house, I would immediately adapt and learn to cope and handle everything. I was a very confident child. But I never moved out, and I've found transitioning into adulthood very hard. After reading up on autism, and comparing my own past patterns of overstimulation and burning out to my current trajectory, I begin to wonder how close I actually am to breaking down. Somehow I, the most laid-back, accepting, rational, independent-minded person I could imagine being, am still constantly stressed out, lost and confused, and feeling isolated. I am fully functioning, employed, in a good relationship, going to school. But that's almost more than I can handle already, and many days I just want to give up all my dreams and go be a hobo in the wilderness. Without my family, where would I be?

I can't tell what normal is. A lot of things I used to think were normal, are normal--for autistic people. The message I get all the time seems to be, "everyone has problems, you're smart, deal with it." It's a question of fine degrees and social situations, which is not my strong point. And I put massive effort into just dealing with everyday life, and I can barely handle it. But I can, for now. So if I do break down, what, then I qualify as "autistic enough"? If I can find a coping strategy that allows me to hide the symptoms, then I don't qualify to have the underlying problem treated? No one seems to know what the underlying problem is. It's so irrational, I hate it, hate it, hate it...

With some kind of executive dysfunction, it's all I can do to show up to work on time, or to get my homework done. With both of those demands on me, I'm having trouble stabilizing my sleep schedule or diet, I'm struggling to move toward healthier habits to reduce the stress, but it's hard because of the disorganization and, yeah, the stress. The more I try to do, the less coherent I become. My boyfriend texts me to ask what's on my mind and why I'm shutting him out, and I long to throw my phone at the wall because I can't stand to be interrupted, no matter what I'm doing. And I don't see how bad all of this is until I write it out, because I'm not having a panic attack, am I now? So I must be all right. It was probably something I ate.

So... I need to get some closure on this, before it kills me. I even have trouble working on the stress, because when I'm more stressed I act more autistic, and that reduces that anxiety. I know I can't sit around and wait on doctors, I can't even trust this random social worker to recognize ASD in a female young adult. I need to work this out for myself and take care of myself better. But damn it all, I'm sick of spending years fumbling around in emotional and intrapersonal issues I can hardly understand. I'm sick of trying to be my own psychotherapist. I'm trying to prepare to open up to this social worker guy, who I've never met, and I'm scared to death that I'm not going to get any of this across, and the guy is just going to diagnose me with social anxiety or mood disorder or something else I do know I don't have. The worst thing that could happen is that I do this to myself, and make myself actually share all of this somehow, and he says, "Oh, you're perfectly normal and healthy and there's nothing wrong with you, stop wasting your time."

The humiliation. How could I mention that to my loved ones? "Oh by the way, I spent the last few months thinking I had autism. Turns out I'm just delusional. Oopsie, never mind." I would far rather identify as a high-functioning autistic than as a low-functioning neurotypical. I mean, are autistic people really just "low-functioning" NTs? Heck, that's the problem with functioning labels! That kind of mindset is what I'm afraid of encountering.

Anyway, I need this identity crisis resolved, for the sake of my sanity. And I need it resolved by someone else, however hard it is to entrust a stranger with something I have, possibly, been gaslighted over before.

Ehh maybe I should just show this post to the social worker guy. That would make my case, right...?

I know a lot of people get told it's just GAD/social anxiety. It seems that a lot of people with standalone SAD are quite adept with interacting with others when they get past the anxiety/fear of embarrassment, and were quite socially together before the SAD kicked in.
That's never been the case with me. Social interaction problems stretch back long before the SAD kicked in.

i am struggling with this as well... at some points i just go with it and think or refer to myself as an aspie and sometimes i hesitate...

my middle kid has aspergers diagnosed and there are several autistic traits he has that i clearly don't... he used to hit his head and pull at his hair... very sensitive to noises and textures... if you didnt know he had aspergers/ASD you would just think he's odd and kind of annoying...

i wont go into the traits that would identify me as aspergers... maybe another post... but i certainly relate to it on the most fundamental of all levels... i have NO idea how to interact with people... i am seen as either completely off the wall goofy sometimes or callous and uncaring...

even if i wasnt diagnosed i could certainly benefit by learning the adapting and coping strategies that aspies use...

I'm not an "Aspie" technically---since I started speaking abnormally late.

Aspie is more of a general term, to me, for somebody who exhibits Asperger's-like symptoms.

I don't feel bad in using the term "Aspie."

I know a lot about neurological diseases. Perhaps the best known today are MS and ALS. What you might not know is that a small percentage of those diagnoses with MS actually have something else. They often spend years getting additional testing to pin down exactly what they have. With luck they can get a diagnosis and finally associate with others who have the same very rare disease. Or they may never know exactly what they have. Even with genetic testing. There isn't any government funding to study rare diseases. If enough of them get together they may do private fundraising to pay researchers to help them out.

You would think that pinning down diseases would be easy since testing can reveal exactly what is broken. But, it is all about money. Drug companies can only make money on disease that could cure a lot of people. Logically, the government should fund such research to give smart Aspies something to do, but people don't want to pay higher taxes needed to fund such research, even though, in the long run, everyone benefits. A lot more than more weapons and a bigger military.

Here is my general opinion and observations on the value of self-diagnosis or self-identifying.

You will not receive benefits or supports from self diagnosis.

Even without benefits diagnosis of any kind can provide an explanation needed to move forward with ones life.

Some people need professional validation.

Knowledge of how autism presents in adults among psychologists is lacking. The older you are or if you are female the more likely even if you are autistic that you will not be diagnosed or misdiagnosed.

Other issues are lack of insurance for adult assessment and fear of employers finding out.

Even the most knowledgeable, careful professionals have confirmation bias and misdiagnose.

Autism assessment is based on behavioral observation and recall making it more subject to error than other diagnoses.

While the self-diagnosed are subject to more criticism and doubt from others, professionally diagnosed people are far from immune.

Conclusions:
If professional diagnosis of how autism presents for your age and gender is available my advice is to do it. Professional diagnosis by an expert in how autism presents in your age and gender is more likely to be accurate than even the most well researched self diagnosis. Even if you do not need benefits or supports at the moment it can provide insurance in case things go wrong at a later time. It will be more difficult later if you are desperate and financially less well off to first start what can be a very lengthy and complicated process.

If professional diagnosis by a clinician of how autism presents for your age and gender is not available due to competency or financial issues etc a thoroughly researched self diagnosis is a good workaround. Several experts such as Tony Attwood agree.

Another solution is come to the conclusion that you suspect or are probably autistic. The benefit is you will probably be more open to contradicting evidence. The cost is more self doubt which can become crippling.

I think the problem with the OP is that Britian's National Health System is unable to provide an adequate diagnosis. And he doesn't seem to fit in here either. Which, one may logically conclude that he may have a serious disorder that isn't autism. How does one get that diagnosed if it isn't a common disorder on the "radar screens" or part of the general knowledge of the people doing the diagnosis?