Why get diagnosed as an adult?

[meepmeep]

All this time I've been trying to run and maintain my self/mind/emotions using the wrong owner's manual.

I love that! That is exactly what this feels like to me - that the operating system of my brain is different and the “neurotypical” owner’s manual doesn’t apply. It’s not wrong or dysfunctional - it’s just different.

 

[Nervous Rex]

I love that! That is exactly what this feels like to me - that the operating system of my brain is different and the “neurotypical” owner’s manual doesn’t apply. It’s not wrong or dysfunctional - it’s just different.

I had meant to directly address the "disability" part of your original post, but I forgot (I blame it on shiny things).

The counselor who diagnosed me shut me down every time I referred to myself as "broken," "wrong," or "disabled". He said, "You're not broken. You're just different." A diagnosis doesn't mean disability - it's just a difference.

"Reading the wrong owner's manual" is just the quickest analogy I can come up with to explain the difference.

 

[Peter Morrison]

You seem very well-balanced to me, and you can rationalize not knowing an official diagnosis pretty well. The pain and confusion of not knowing about ASD have passed for me. I'm still the same person, but I'm aware of my oddities and have learned to deal with them through trial and error. I'd like to get an official diagnosis too, but I feel like a woman who is pregnant and doesn't need a doctor to tell her she is. The doctor would be useful for related issues, though. I still battle depression, but I don't challenge my ADD or my unfiltered thoughts. The rest of it is what I can do, and what I can't do. I accept that because I have lived with it all my life. An official diagnosis won't hurt. I agree with so many of the responses here that explain the value of a confirmation. It's valuable in different ways to different people. If I get an official diagnosis, I'm going to frame it and put it on the wall, just to remind me.

 

[Kevin1968]

I found it interesting to note that these people who come to the forum asking people to participate in studies and fill out surveys are people in graduate school or already finished graduate school and are apparently interested in Autism. These are some of the people responsible for diagnosis. Reading the comments of these threads, it can be seen just how highly they're thought of a lot of the time.

Hopefully they will be able to diagnose people earlier.
A diagnosis at 15 would have been useful, but I'm now almost 51, I've made it this far learning my lessons the hard way.

 

[Kevin1968]

I had meant to directly address the "disability" part of your original post, but I forgot (I blame it on shiny things).

The counselor who diagnosed me shut me down every time I referred to myself as "broken," "wrong," or "disabled". He said, "You're not broken. You're just different." A diagnosis doesn't mean disability - it's just a difference.

"Reading the wrong owner's manual" is just the quickest analogy I can come up with to explain the difference.

I wrote a post Recently Broken or Always been Faulty? when I came here first describing myself as "broken" or "faulty" and another person on this site was trying to tell me to use less "negative" language but it was how I felt at the time. Also as I've said elsewhere "glass half-full" is the exact same thing to me as "glass half-empty", using a positive word wouldn't make any difference to me (I know it does matter to others).

I was "broken" at the time, but not because I am different, but because I had stopped coping at the time, things about me that I had ignored had been highlighted. However I currently don't consider myself to be "faulty", I just have different strengths and weaknesses than most people.
My difficulties arose from a lifetime of pretending that I was the same as everyone else and ignoring all the indications that I wasn't.

 

[Anarkitty]

I don't feel the need to be diagnosed for similar reasons as the OP. I'm 48. (I've been saying almost 50 so that 50 doesn't come as a shock in a couple of years.) I'm married and the mother of five. I've already figured out how to get through life with my brain, and now I have the information I need to find more tips and tricks.

My husband tells me that we should go to an accountant to get our taxes done because I hate doing them. But I tell him that that would be absurd because where does he think the accountant will get all of our financial information? From ME. So I'd still have to do most of the work, but I'd also be out of the money that he would charge.

I feel about the same way about being diagnosed. I can go spend a couple of thousand to have an expert opinion, but the expert will be looking at the information coming out of my own head. After a ton of reading and going through Cynthia Kim's I Think I Might Be Autistic, I'm as sure as I can be already. I don't need to be convinced, and I don't think I'd believe an expert who told me that I'm not, and that has happened to people who were later diagnosed.

The only reason that I kind of want a diagnosis is for my family members. They have told me since I was little that they don't know where I came from, that I'm an airhead, that I'm all book smarts and no common sense, that I just go on and on and on about things; they call me grace because I have none. And I kid you not, my sister, just a few months ago, brought up a story about when I was learning to drive: "Ha ha, I heard that when you were learning to drive, you would pull over to the side of the road when another car was coming towards you." (I still slow down and scoot over as much as I can.) But when I said I was autistic, they didn't believe me. But a diagnosis might not convince them either, so I've just decided that I don't give a rat's ass about what they think about this. If they want to know for certain, they can pay for the diagnosis.

I just don't think that it would get ME anything.

The KNOWING is different from the DIAGNOSIS, though. Knowing is important. Knowing is what helped me understand a thousand awkward, uncomfortable, weird, confusing events and conversations from my lifetime. Knowing is what has helped my husband of almost 30 years to understand that I'm really not being deliberately perverse when I correct him when he has a detail wrong in a story, when I argue over semantics, or when I ask him to just freakin' park on row 6 at Walmart, for Pete's sake, because THAT'S WHERE I PARK AT WALMART, AND IF IT REALLY DOESN'T MATTER, THEN JUST PARK WHERE I WANT.

Ahem. He has ADHD, and I have autism. Knowing these things helps us to understand each other better, though I still have trouble understanding why he can't just put his keys in the same place all the time and why we couldn't find his phone for three days because it wasn't charged when he lost it, and he can't understand why row 6 is important to me. But we at least understand now that there are legit reasons for both of those things and that neither of us is intentionally making the other one crazy at times. That's huge.

But I didn't get those things from a diagnosis; I got that from knowing. If you need a diagnosis to KNOW, then it's extremely important. And if you can know without that, then it may not be important to you at all.

 

[Fino]

I've come to the conclusion that people who don't put things back in the same place every time are psychotic.

 

[Anarkitty]

I've come to the conclusion that people who don't put things back in the same place every time are psychotic.

Pretty much. And how hard is it to plug in your phone to charge? OTOH, he knows how to talk to people that he doesn't already know. I think that's also psychotic, but it's also really useful. ;-)

 

[Fino]

Pretty much. And how hard is it to plug in your phone to charge? OTOH, he knows how to talk to people that he doesn't already know. I think that's also psychotic, but it's also really useful. ;-)

Some people are incomprehensible...and I just learned what OTOH means! It's very funny sounding!

 

[meepmeep]

If you need a diagnosis to KNOW, then it's extremely important. And if you can know without that, then it may not be important to you at all.

That makes sense. And yes, knowing was very powerful. I trust myself a bit more than I trust the medical establishment, in general - I’m the one living inside my head for 42 years so I’m sure I know it better than some random psychologist who’s meeting me for the first time. And when I first realized that I wasn’t some sort of unique failure of a human, but that there were others like me and that this “weirdness” had a name - that was powerful. I guess I’m confident enough in my own judgment to consider that to be enough.

I actually haven’t discussed the self-diagnosis much with my family. Only with my mother, who is the one who brought it up recently (which is what brought me to this forum). She said she noticed very early something was different about me, and that now she’s pretty sure that autism is what it was. Hearing it from another human being was also quite powerful, and since my mother knows me pretty well by now, I trust her judgment as well as my own.

I’m not sure I even want to tell anyone else. My wife doesn’t know about any of this self-exploration, and I’m not sure I’m ready to tell even her, let alone anyone else.

 

[StopDiagnosingPeople]

I feel very very very strongly about this.

DON'T DO IT!

As long as you are not officially diagnosed, you can be presumed not be to autistic. You have plausible deniability. You made it this far, established a family, got a job... Sounds like you made it this far just fine! Maybe not perfect, but lots of people have imperfect lives. There's no good reason to do this to yourself!

 

[GaleWarning]

Please forgive my prolixity: this is my maiden post here, and I might need some time to get the hang of things.

Obviously, a lot depends on your level of function in the world, your experiences growing up and what, if any, sources of support you have currently.

In my case, learning about ASD went a long way towards explaining so much that had inexplicably gone wrong in my life: all the way back to my childhood (when I was very nearly institutionalised), through to many adult breakdowns and subsequent psychiatric misdiagnoses (some that carried treatments that have left me with long-standing medical problems even decades later), academic issues, lost jobs, career derailment, broken relationships, abuse, harassment, assaults, and family abandonment.

Several years ago, when I was finally able to access treatment for depression and agoraphobia, I told the psychiatrist who was doing my intake interview for mental health services that I suspected that I might have Asperger's. To be fair, this was an old-school guy who was close to retirement and probably didn't know much about how autism presents in females, especially later in life after decades of "masking" and trying to pass.

His response, 40 minutes into our only session, was that I couldn't possibly have Asperger's because I had made a joke - and therefore I had a sense of humour, which obviously precluded me from being autistic. Never mind the fact that this "joke" was a well-worn quip that I had formulated years before in reference to a difficult life event - something that might diffuse any tension created by mentioning it: there is absolutely nothing the precludes a person with ASD from having a sense of humour! It's oftentimes one of our coping mechanisms for the myriad awkward situations we find ourselves in (and something that, I suspect, gets us into trouble more often than not).

I accepted his pronouncement, however, and never again mentioned Asperger's or autism to a medical or mental health professional, as I figured that it was off the table. I still knew that there was something "wrong with" or "off about" me, but never found anything that felt like it fit the way that ASD had.

Two years ago I relocated and saw another pdoc for medication support. After eight months of regular (every 2-4 weeks) 45-minute sessions he informed me that he had entered a diagnosis of autism spectrum disorder into my record - not only to possibly help me find the resources to move forward, but also to help other medical and mental health professionals so that they would know how to deal with me! (Evidently I am just that much of a pain in the ----). This was a totally unsolicited and unsuspected diagnosis, but I can't exactly say that I was surprised.

As strange as it felt at first to have this "label" attached to me I'm choosing to use it as a tool of "empowerment" (sorry to use such a clichéd term). I've long given up being able to access any sort of "treatment", but I believe that there are ways that I can use this knowledge to gain what I need to move forward with my life without using it as a "crutch" or an "excuse for my shortcomings".

At the moment, having settled in a smaller community with new providers who don't currently support this diagnosis, I am exploring options to assert my prerogative as a patient to ensure that it be taken into consideration in any emergency situation that I might find myself in. I am also in the process of finding a way to officially designate a close, longtime friend who has offered her assistance as a dedicated mental health advocate: so that if I am either unable to speak for myself - or find myself in a circumstance where I have been denied credibility or agency by local providers - she can intervene if necessary.

I have been unable to work in paid employment for several years, and the last two years I was still working it was in a strictly telecommuting capacity. With this diagnosis in hand, I no longer have to be subjected to work requirements that involve face-to-face public contact on a full-time basis, as in the past such positions have ultimately been a recipe for mental breakdown, being terminated or both (and even, many years ago, occasioned a period of stalking by a customer who managed to follow me home one night to find out where I lived).

Currently I am in the process of trying to gain access to resources that will allow me to upgrade my skills in areas that will make it possible to return to working from home again. When I am in a position to try to re-enter the workforce, I have decided to disclose my condition to potential employers so that they may not only be aware of "what they are dealing with", but also so that I have a basis for requesting the kind of minor accommodations I might need to perform optimally - and to hopefully avoid misunderstandings and, most importantly, burnout.

I used to be a professional, union musician who, upon renewal of an annual contract with my main major "gig", would be issued a schedule of rehearsals and performances for the coming year. Whenever I interviewed for a non-musical day job to help make ends meet, I would pull out a copy of this schedule and tell the potential employer that I had already contracted the hours in the schedule to another entity and that, further, I would need x number of minutes prior to these events to travel to the venue (and, on performance days, further time to change into my concert drag).

I never once encountered an employer who claimed to have an issue with this, and upon hire I duly presented them with a copy of this schedule for their reference.

So, of course, the only time I ever lost one of these jobs was when an employer would decide to push the issue and try to force me to work during these "off-limits" hours (without exception when there were no urgent deadlines, and there was nothing that I couldn't do the next morning). No matter how much I tried to remind them that this time had essentially already been "sold" to someone else, I was without fail provided with an ultimatum: work these hours or you're fired.

(Power hunger and stupidity will never loose their grip on us here in the land of capitalism red in tooth and claw.)

Essentially, I see the official diagnosis of ASD as another version of that old musicians' union schedule I used to drag out before a potential employer. I may not, strictly speaking, have the right to expect accommodation through the ADA, but I will not go into an employment context without making clear what I am bringing to the situation, and what I need in order to perform the work.

I'm hoping that this official diagnosis will carry the imprimatur that will assure the employer that I am not acting out of ignorance or caprice; and if, despite my best efforts, circumstances ultimately conspire to go pear-shaped at some point (which, with my luck, they are bound to do), the employer cannot claim that my circumstances come as any surprise to them.

My apologies for the long post, but this is the case I make for an official diagnosis for anyone who has suffered the type of personal and professional decompensation that I have, and for whom a diagnosis might be a potential asset.

If your life is going fine without it; if you never find yourself in a situation where no one has your back; if you're uncomfortable with having a "defective" label slapped on you (or as, in my case, you don't agree with the "defective" labels that were assigned to you in the past); if you've never felt like you've gone through life feeling like a cross between a bull in a china shop, a kite that's snapped its string, and a person whose boat has suddenly capsized, leaving them flailing around for something to keep themselves afloat; then it's your prerogative to go on with your life "untainted".

It's no longer an option for me.

 

[tlc]

Between the information on this forum, and books I have read, I know what I am. I finally have direction to my life and I finally have answers to why I've been this way for 42 years. That is a good thing.

I can settle for being considered a normal member of society who has many quirks (and doesn't everybody in some way ?). Quirks that people will have to learn to deal with. An official diagnosis would be a "mentally unstable" label that could be used against me in all sorts of ways, especially as information sharing becomes more prevalent in this world. I live in a small area and word spreads fast to begin with.

Even if I wanted an official diagnosis, what's in it for me? There are little to no resources around here for autism. I'd spend a lot of time and money, probably have to travel 3+ hours one way to the bigger cities. What would I get from it? At best, people would see me as a hypochondriac or someone trying to make excuses for myself. At worst, I'd be denied jobs, parenting time with my daughter, the ability to buy a gun if I wanted, etc.

Could I even trust an official diagnosis? I know myself much better than a doctor could learn in a short period of time, by hopefully asking the right questions. I already have issues with doctors not being able to understand tangible physical ailments that I've lived with most of my life.

I am my own person. There is no point to get an official diagnosis unless it's going to make my life easier and better. I don't see how that could happen.

 

[GaleWarning]

Well, tic, if your life hasn't been tremendously impacted, it doesn't make much sense. I, too, live several hours from any city large enough to offer treatment - even if my current insurance provider would cover it - which is one of the reasons why I've given up the hope of dedicated treatment (its questionable efficacy being another issue in my case).

However, I take issue with an autism diagnosis necessarily being automatically interpreted by anyone with half a brain as synonymous with "unstable". Certainly, I'd rather be labelled autistic than bipolar, borderline, schizophrenic, psychotic, intellectually challenged, etc.

Also, if you don't mind my saying so, I think it's a lot easier for men to pass "under the radar" with ASD, as the bar has been set so much lower for you as far as social functioning goes. I sincerely believe that, were I a man, I'd just be considered a bit clueless (but still more than capable), instead of having my social deficits held against me and - particularly unjustifiably - against my job performance itself (by "job performance" I mean actually just doing my work, not the office politics and personal interactions that have proved to be my Achilles heel).

As for owning a gun: as long as you're not violent I can't imagine that any law preventing the mentally ill from owning a gun would apply to you unless you go out and deliberately hurt someone or get into a fight somewhere.

I get the occasional bear in my yard where I live, and I've considered getting myself a rifle (to do little more than scare the buggers away) except that my neighbour used to run the local gun club and has plenty of firepower at his disposal. Plus, I have a deathly fear of guns ever since a rotten little cousin of mine introduced his father's revolver into a childhood game of "cops and robbers" and nearly scared me to death (he's a county sheriff now, btw). But that's neither here nor there.

From what I understand, at least in my neck of the woods, you have to have a conviction or at least an arrest for a violent offence, a restraining order or a 5150 (or whatever involuntary holds are called in your state) to even come near falling under the aegis of a law that might mandate more restrictions on you than upon anyone else in your community.

As to private employers: well, 'nuff said - ignorance knows no bounds sometimes.

btw, I'm curious: re your profile pic - is that the bridge at the Sault? Nice shot.

 

[tlc]

Thanks, the pic is of the Mackinac Bridge, between the lower and upper peninsula. Maybe an hour from the Sault.

I take issue with people being considered "unstable" who can function just fine. But it seems to be the direction the world is headed.

There currently is little or no restriction on people with mental issues owning guns. But there has been a lot of debate lately about getting something like that put in place. Because most of the time you hear about another mass shooting, turns out the person had serious mental issues and people say why was this allowed to happen again? I fear that autism could be lumped into a group of other mental issues, out of ignorance, laziness, or both.

Not much different than being put on the official sex offender's list. It was created to help keep people safe from predators. But you're on that list for life and have the same restrictions on your life, whether you raped a child, or you were spotted peeing outside in the woods.

I currently don't have interest in owning a gun, but I may in the future. I recently got some acreage and woods, and we have plenty of wildlife here. My dad lives on hundreds of acres. I may want to hunt or want something for personal protection in the future. I hunted when I was younger, and living off the land is very appealing.

I'm fortunate to have stayed at my current job for 20 years, and the people know how to work with me. But only one other company remains in the industrial park, all the others have closed up. My previous job closed up too. Mine could close up as well. It's a different world finding a job than it was 20 years ago. And as time goes on in this world of record sharing, an autism or other mental diagnosis could be one of those things they use as a filter, and you would be required to report it. There are a lot of things where employers are legally prohibited from discriminating, but they do anyway. They just provide a different reason, or no reason at all.

I just don't want an official diagnosis on my record, for anyone to blindly use it how they want, without actually knowing me and that I am ok.

 

[dhl02]

There's really only one reason to get formally diagnosed as an adult, and that is if your autism is interfering with your ability to make a living for yourself. As long as you can support yourself financially, there is no need to get a formal diagnosis. If you can't support yourself financially, then it is a worthwhile process.