Question for the self diagnosed

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Thank you. This was my point exactly and I do not believe that I could have said it as concisely and politely. The unfortunate reality of the United States and its history is that treatment of minority groups and the (excuse the following term, I mean it anachronistically) "disabled" has been at various times outright criminal. I would never suggest negotiating for a diagnosis, but if one seeks the protection of certain laws in the United States an "official" diagnosis will serve them better than a self diagnosis. This is in response the original question posed by the thread. That is the only difference as I see it - an "official" diagnosis will better serve as sword and shield in the United States legal system. And the other unfortunate reality is that these rights do need to be strongly advocated for at times.



And I agree with this completely. An official diagnosis is not a "necessary thing." As others have pointed out, self discovery is not only an important first step but at times the only step you have to take. There is a very real chance that you have a workplace that is already accommodating of your needs without having to revert to a medical allowance. There is a very real chance that you have family support, the ability to work from home, or the freedom to make changes to your personal work space. Self discovery of and self association with ASD provides the real tools you need to live a more comfortable life. By this I mean the direction to read and compile information directly related to "getting by" (as it feels at times) in a world that can be confusing. I still swear by the Unwritten Rules of Social Relationships by Dr. Temple Grandin. The only place where self diagnosis can fall short in making your life more comfortable is when dealing with the American legal system.

People have always been an alien species to me, and while I used to agonize over being a miserable friendless wretch, I had no absolutely no interest in what they considered fun, such as shopping (barf), sports (barf), clubbing (extra big barf) etc. I couldn't (still can't) even fathom how such mundane things can be interesting. I was much happier reading neurology textbooks in the reference section of the library. I can communicate well when writing, but trying to verbalize a complete coherent thought in a way that another person can understand is an ongoing struggle.

Eye contact is supposed to happen. Who knew ?? I prefer to avoid the raw searing experience of exchanging naked soul crawlies.

So the social aspect is one part, but the more damning evidence has been in a life long struggle with sensory issues. I can distinctly remember the nauseating smell of the ink on barcodes at the grocery store as early as four years old. I have had a life long battle with crawling out of my skin/melting down because of clothing. I can hear a conversation whispered on the other side of the house. Noises that don't bother other people are horribly painful. Smells are excruciating. When there is too much going on my vision shuts down and I can't process anything, and sound bounces off in a non penetrating echo.

Every time I think about my childhood, more things make sense that I never really realized weren't normal. It never occurred to me that sandwiching myself under the couch cushions and making my sister sit on top was weird. It never occurred to me that other people probably don't burrow in cardboard boxes, or make a nest at the top of the hall closet under every blanket and pillow they can find. I used to literally, physically, bounce off the walls, and I was the uncontested champion of indian rugburns, because I enjoyed the way they felt. How would I know it was weird? I didn't have any lasting friendships.

I didn't know the weird things that I did with my hands, or the rocking, or the flopping around like a maniac on the bed, etc, were
an indication of anything "abnormal." I just wanted to be in one solid weighted piece, and not a disintegrated disaster made of static electricity.

It wasn't until a few years ago that I realized that what I said or did could hurt other people, and that they are human beings with feelings. I felt more compassion for starving children in Africa than I did regarding my actions that affected the people that were "closest" to me.

I have burning obsessions that have been with me since the age of three, and I wouldn't give them up for anything.

I am self diagnosed. Insurance won't pay for an assessment. I really don't know how a shrink would disagree with my conclusion.

I was self-diagnosed for two years before finally getting diagnosed by the psych services center at my university. My big problem was money as well, and I got lucky because my school was offering diagnostic services for about a quarter of the price of a private practitioner. If it weren't for them, I still wouldn't be diagnosed.

Anyway, it took me about a year's worth of hard studying and self-reflection to determine for myself that I really did have AS, being as certain as I could be without a doctor's confirmation. Throughout the beginning of that first year, I went through frequent fluctuations, much as the OP did, thinking one day that I absolutely had it, and the next that I absolutely didn't and that I was just being weird. I gained confidence in my self-assessment by focusing on the physical traits I knew were real; the sensory problems and emotional dysregulation that caused meltdowns, and by collecting comments from my friends and family. They had a tendency to say things like, "stop being so literal," or "talking to you is like talking to a computer," or, "your lack of eye-contact is offputting," without my ever bringing up AS in the conversation. I knew I could trust those judgements better than my own, and better than the opinions I would have gotten if I had asked, "Do I display X trait?" because the people saying them had no agenda one way or the other about my having AS or not.

If you can pick out moments where people who don't know that you suspect AS comment on your behaviour by describing AS symptoms, or if you have physical symptoms that are clear and apparent and cannot be misinterpreted in the way social perception can, such as sensory problems, you'll have more solid proof on which to base your self-diagnosis, and should subsequently feel more secure in it, and comfortable discussing it with others.

If it were only me who thought I was on the spectrum, I don't think I'd be anywhere as confidant as I am now.

I started researching autism when someone asked me if I had aspergers. I didn't know what it was, so I started reading about it, and was surprised at how it easily explained most of my odd traits. My best friend is an OT, and worked with autistic kids. I asked her about it, and she said she thought for years that I may be on the spectrum. She asked her friend, who also works with autistic kids in a special school district, if she thought I was on the spectrum. She said "Oh, he totally is!"

Recently I told a friend who has known me for half my life that I think I'm on the autism spectrum. He said "I already know that."

I'm in contact with a local autism services center. I sent them a description of my traits, and that I'm looking for an assessment. One of the assessors emailed me back saying that from my self report, an assessment may be a good choice for me. They're sending me a bunch of paperwork to fill out, and I'll hopefully have an appt in July!

Because I seemed to be the last person to know (when it comes to my friends who know anything about autism), I feel quite confident that I am on the spectrum and feel somewhat comfortable with my self diagnosis.

Until a few years ago, I didn't even know that making eye contact was an important part of communication. I was stunned to read about it in a body language book that I checked out from the library. A book I checked out, because I had realized that I had no idea that I didn't know how to read other's body language.

Fast forward to the present, after finding out that these deficits are part of AS, it helps to make sense why I've struggled. The funny thing is that I thought I was doing better with eye contact until I was asked by my wife recently, "how come you never look at me when you talk?" I thought I did, but even though I can make eye contact now, it takes a tremendous amount of effort, which usually interfere's with my listening ability and eventually I have to look away because it usually starts to be painful.

I think the thing about AS that is interesting to me is that NT's have these abilities innately, whilst those on the spectrum have to actively learn how to do them. It's not an impossibility to do it, but the fact that it has to be learned is a distinguishing characteristic.

The standard argument for seeking a professional opinion is that a professional knows more than you. But this is in fact not a sufficient reason for seeking advice!

Just because someone knows more than you, doesn't mean they know enough

Say you were a person who knows nothing about at all about computers. Who would you rather have attempt to fix a problem with Windows?
a) You
b) Your friend, who knows how to use the start menu to turn the computer on and off but knows nothing else about windows.

In this situation, your friend knows more than you but both you and your friend don't know nearly enough about Windows to fix the problem. So surely the most trustworthy person to attempt to fix the problem would be a) You. You could read books and attempt to find the bug yourself. You have no reason to entrust this task to your friend, as this would introduce an unnecessary unknown and an extra element of risk into the situation.

Point is, no one really understands A.S. Psychologists may know more but they don't know enough. In such situations, its much better to trust yourself than a third party.

I don't mind people self diagnosing because I know how much it costs and the trouble one has to go through to get a diagnosis in the US. And I also know that people who self diagnose, at least the majority of them, will do extensive research for months and even years before coming to their conclusions. These are not just matters of I read one article or I took an online test and so I decided I am Autistic just for the fun of it. These are people who are seriously suffering and whose lives are seriously affected and who have gone through a painstaking amount of time to dig deep and find out what is causing their suffering. And most people don't do it alone. They do ask the advice and opinions of other people who know them or of people who are experienced in dealing with Autism. So it is not completely subjective. I do appreciate it when self diagnosed or in my case an unofficially diagnosed person makes it clear that they are self diagnosed or unofficially diagnosed or even clinically diagnosed because that information is actually helpful to others. But even a clinical diagnosis can be wrong and sometimes it is so I don't even know if we can say for 100% that a person who has that piece of paper is really Autistic either. But what I think is important is that when we say we are on the Spectrum. if it's more than just a casual mention, then we should say if we are self, unofficially or clinically diagnosed. If it's just a casual mention that has no real bearing on much then I would not bother but it it's important than I would definitely specify that I am unofficially diagnosed. And how many people have I met that tell me oh, my kid has a touch of Autism and I know that the kid is not on the Spectrum because he does not fit any of they DSM 5 criteria. He just happens to be super smart or a little shy. But I don't question them or argue with them, I just let that in one ear and out the other and talk about whatever we are talking about. Whether they think their kid is on the Spectrum does not affect me one way of the other so I don't need to give it much care.

You missed what I was saying completely. It has nothing to do with pre-existing conditions. It is because they assume that because you have made it this far without care, you apparently have already learned how to cope. If you already know how to cope, then there is now reason for therapy to teach you coping mechanisms. Therefore, there is no reason for them to pay for a worthless treatment. This was from counselors I visited first in February, and the second April to current.

And don't get me going about expensive deductibles. My employer health care suddenly picked up a massive deductible of $10,000.

same for me, without stimming, too. As I was born with syndromic autism (caused by Klinefelter's syndrome), the degree of repetitive behavior is less confined compared to other autists.
At least, that's one of the results of this paper http://pediatrics.aappublications.org/c ... .full.html, see http://pediatrics.aappublications.org/c ... nsion.html

I don't have routines (rather I'm missing them because my daily course is fairly chaotic) and certain daily rituals but several special interests distinguishing me from peers since early childhood.

For me, self diagnosing feels correct because it would explain nearly all difficulties in my life. Other difficulties are covered by the low testosterone values but these cannot explain behavior and focus on special interests nor my extreme love to write (which is rather unusual for the Klinefelter's I met so far).

However, it's difficult to go on without official diagnosis. Problems at work mainly develop as peers and colleagues don't understand me. They don't understand me when I say I'm sick because my facial expressions often tells the opposite. Therefore, they often think I just simulate. Obviously, I am not able to display negatively connoted feelings, not even positive when they say I'm looking annoyed but in fact I'm happy while doing something I like.

I'm afraid they would tell me I just look for excuse when I tell them what's going on. On the other hand, I could lie and tell them I'm already diagnosed. But I am not good with lying and implications would mainly concern my employer who would demand an official diagnosis. In the end, it's quite difficult what's right in that situation. I also heared it's hard to get assurance (e.g. occupation disability) when you're officially diagnosed. It's a tightrope walk between relief, present oneself with open mask and difficulties getting a job or assurances.

Last edited by Pompeji on 07 Jun 2014, 6:15 pm, edited 1 time in total.

This is my situation as far as my "aspie status" goes:

I am as certain as it is possible to be that I have Asperger's, but have no diagnosis. I have just about the whole range of issues and "symptoms", including:

Extreme difficulties with social relationships and situations.

Inability to relate to social expectations and rituals - concepts like fashion, status and hierarchy have little meaning for me.

Obsessive interests.

Extreme analytical, logical or literal thinking.

Tactlessness and brutal honesty. Acerbic, often inappropriate humour.

Stimming (mainly pacing).

Aspie-type sensory issues, especially those related to touch, sounds and "overload".


I spent several years in the late 1990s reading every self-help book by every psychologist I could find out about, and getting absolutely nowhere. These books were clearly aimed at NTs with mild to moderate issues, whose minds could be reprogrammed. I don't think I once read a reference to "hard-wiring" issues, or autism. Within a few weeks of discovering WP and after reading the posts therein, my situation and my past life suddenly made sense for the first time ever!

When I joined WP, I had to register my aspie status. I selected " Have Asperger's - Undiagnosed" as the closest to my perception of the reality. I am not entirely comfortable with this, as it seems subjective, a bit arrogant, and I can see it might grate with many diagnosed aspies.

The only alternative offered was, "Not sure if I have it or not". In a narrow, objective and technical sense, this might be my appropriate designation, as I obviously do not have the certainty of an official diagnosis. In a wider and far more meaningful sense however, I "know" it's a cop out. I'd simply have the gut feeling I was lying.

Would there not be a case, as far as WP aspie status is concerned, for having a category along the lines of "Good reasons for believing I have it" or "Have symptoms of Asperger's"? I admit that these do not seem entirely satisfactory either, but would surely give more flexibility than at present?

I'm not going to further elaborate on my own lack of a diagnosis, except to say that at my stage of life (50s), it would not be very straightforward, and that I have grave concerns about the "profession" which administers the system. That's another story.

Agreed. When I wrote, "I have no issues with people self-diagnosing, based upon DSM criteria", I should have added what you wrote (years of extensive research) as a prerequisite.

that's true for me . besides these bunch of online tests, I also asked my parents how I was during my childhood. I even achived they filled out the attwood test separately, with coming to an almost unique conclusion. http://www.aspiana.de/attwoodtest.htm

Surprisingly, the score was very close to mine. I expected a much lower score but as we went through it I had even to advance the score making a clearer picture of it how I was during childhood. I couldn't remember I always had a monotone voice, avoided eye contact, avoided imitating plays, couldn't take perspective of others, etc. My parents intuitively reacted to my odd behavior, psychomotoric issues, with therapies, which helped gaining motoric balance and better self-awareness of my body. They didn't even know at this time I had XXY condition.

Besides family and the fact, peers often do not understand my odd behavior I also did extensive research on that topic. I wrote to scientists and asked for more information, about possible connections of both syndromes. And I finally got it confirming my feeling about the self-diagnosis. Papers are clear that autistic traits are listed in the traits for Klinefelter's syndrome, so it's neither a self-delusion nor kind of wannabe-part-of-something. If the core symptomes were less defined, I would skip it and just go ahed. But the effects on peers, work and everydaylife are too strong to make fun of it.

I believe that most people who are self-diagnosed actually know more about Aspergers and Autism in general than the average psychologist, as many of them are not familiar nor have experience with either. The only ones who would know as much, or more (since they have seen so many people, and know some techniques that can help with some issues, and the tests, etc) about it are psychologists/therapists who are experienced and/or specialised to diagnose Autism.

And on a side note: There is Universities where you can actually go to classes that you would need for a diploma (I don't mean just for psychology, I mean anything that you would be interested in and is offered at those Universities), except it is free and you don't get the credits, but you can still acquire the knowledge. (p.s. If I'm not mistaken Steve Jobs went to some of these classes)

I never wrote this and I don't really even fully understand what it means. I am not saying anything about what was posted here, I am just clarifying that this was someone else's post. Sometimes if you miss a quote parentheses you can misquote a post. I believe MPEJDBA might have actually written the post. Please correct me if I am wrong.

Exactly.

I've done quite a lot of research about autism and I already had some suspicions about it for years before I ever began doing any research. But I had dismissed the possibility earlier because I didn't know much about autism, and I thought you had to be very low functioning to be autistic.

If I hadn't been misinformed like that, if I had ever come across just one good article that described what autism really is, who knows I might have been able to identify it based on reading just that one article. The reason I had to dig deep and do research, is because there just wasn't any information out there to begin with.

When I self-diagnosed my ADHD, I actually did do it based on reading just one magazine article. I had seen ADHD described before (this was early to mid 90s) but it was always referenced in terms of how it presents in young, hyperactive males, which did not sound like me. But then I came across an article written by an adult female, who had been diagnosed as an adult and described what it was like for her. I was floored because it sounded exactly like me.

So I wouldn't dismiss the possibility that a person could self-diagnose based on reading one article...although I think autism is more complex than ADHD and more information would probably be needed...it's just a matter of getting the right information. However both ASD and ADHD seem to have widely varying professional standards of diagnosis and description, and I think that is where most of the confusion comes from.

Yes, I believe a quote parentheses was missed. That was my comment. What it means is that in the United States insurance companies used to be able to deny coverage for pre-existing conditions. This was not limited to something like being on the spectrum, but included things like developing cancer and subsequently being denied coverage and therefore access to some form of cost reduced medical care. The Affordable Care Act (ACA) has changed this and insurance companies are no longer allowed to deny coverage for those pre-existing conditions. FallingDownMan is correct in that occupational therapy, especially if there is evidence of someone having worked in a particular environment "without issue" for a long time, might be challenged or outright denied by an insurance company as a co-pay for being an "unnecessary expenditure." Nevertheless, an official diagnosis may trigger legal (not necessarily economic) protection under the Americans with Disabilities Act (ADA) and rules promulgated by the United States Equal Employment Opportunity Commission (EEOC).

I hope I did not offend anybody as that was not my intention. FallingDownMan, I am sorry that I missed the point. I just wanted you to know that there was that change and that legal protections do exist. I really did think I was helping and that the change might be news to you. I am sorry if it did not come across that way. I am not sure what type of work you do and my own examples are personal and anecdotal. I have no trouble with my work, it is the extraneous elements of the workplace that are difficult. HR has accommodated in the past based on these legal protections and it has made it easier to focus on my work. This has included things that are seemingly as minor as allowing me a less obtrusive desk lamp instead of an overhead light. Additionally, I am sorry if I have offended anyone else. That was not my intention. I just wanted the original poster on the thread to know that an "official" diagnosis (which is not necessary for any other reason) can trigger legal protection in the United States.