What motivates Self-Diagnosis?

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Mine is a different case.

I was in a ride, in the car with a job partner. He told me someone out in the sidewalk just said hi to me and I did not notice. Like a way to say him that was normal in me (when i ride with my wife is the same history): I told that I had small autism. Was a joke, but it was stick in my mind (principally because my son who was 5 years old was so seemed to me). When I could be in my house, in wikipedia saw what autism and of course, what Asperger was.

There are online tests, you just need to google it, and if you thing you are; you are an officially selfdiagnosed Aspie.

Mine was a process between euphoria, sadness and doubt, up to the acceptance. I don't need an official diagnosis and still thinking if my son needs to know how different he is.

I understand your doubt, to be an Aspie seems so cool.

The way I found out about AS is similar. I was eating at Applebee's with a co-worker, when his friend, who's a social worker, started talking about autistic people. I wasn't really paying attention, but then she turned to me and said something like "it's possible you're autistic. You seem to be pretty high-strung." (don't ask me what being high-strung has to do with autism. =3) I ignored her because I didn't think it was possible. I didn't know it was a spectrum disorder, and I thought all autistic people were majorly ret*d. (I'm talking gew-gew gah-gah ret*d). It wasn't till awhile later I saw an "Autism Speaks" bumper sticker and I thought "I should check that out. If nothing else just to take a look and say 'thank god I'm not like that.'" One thing led to another, and I visited a couple blogs with links to this site. I have since realized I was wrong and I probably do have Asperger's for the simple reason that it explains a lot about me that I've been angsting over for years.

Please don't commence with the Autism Speaks hate. I do not, and probably will not, support them.

So, Autism Speaks is good for something eh? It's ok, I'm not for or against them.

No Autism Speaks ambivalence either. =D

I think one of the reasons people self-diagnose is because there is often no other option. Very few doctors, psychiatrists, or psychologists are familiar enough with AS to recognize it in one of their patients, especially in its milder form, so that even if you go to professional after professional, no one will even suggest it, unless you got o a specialist in AS. And AS specialists are few and often expensive.

I first thought I had some autistic traits when I read a book review in the New York Times in 1997. It was like reading about myself! Then I bought the book and I was even more intrigued. I have only now, this past month, gone for an actual diagnosis (which was not-quite-AS but definitely on the spectrum, with specific difficulties in some areas but not in others).

For me it was a matter of not wanting to waste anymore effort with therapists who couldn't help me because they didn't understand the source of my difficulties. Now I have to see if I can get some help that will actually be useful... But for me it's about trying to get help so I can cope with my life.

The cartoon guide to aspergers (pinned topic) image where the guy is in a box and says "it fits!" puts it perfectly. All my life I've been a square peg in a round hole. Never having more than one or two friends, always isolated, always struggling with conversations that were small talk. Always hearing family members commenting on my lack of social life. In high school, my mom WANTED me to go out to parties, because I never did. All my life I know I have been different. This past December, a comment a classmate made to me brought me to the point where I finally considered maybe I have AS. Looking closely at it, along with comments from bosses, family members, and what I know about myself convinced me that this likely explains how my brain is wired. By no means was it something easy to accept.

It took several weeks for me to feel comfortable with it. Even looking back when I was being diagnosed with ADHD and when I was having a major psychological breakdown, I hid my social history from my psychologist.

To me, accepting this label it has helped me understand my strengths and weaknesses. I've always been a freak. Now I understand its partially how my brain is wired. For me now to get a full diagnosis, it would take money and insurance I no longer have. It is financially not an option.

For some, there isn't any other kind of diagnosis to get. I mean...the gold standard for Asperger's diagnosis, the ASDS, is intended for application betweeen the ages of 3 and 18. An adult can still receive a diagnosis using this metric, but how applicable is it, really? Requires a lot of memory to answer some of the questions, on the part of family who were around when you were a child.

Suppose you're an adult and you've perceived yourself as having particular challenges and/or gifts in particular areas, and this self-perception has always been a source of confusion for you. The desire for self-understanding is a powerful thing.

Maybe, then, you're not a freak. Maybe you're just different, and part of a community who is different in a similar ways.

One of us is confused, if it's me, pardon my confusion. This website, Wrong Planet, is not autism or asperger syndrome. In my mind making the argument that it is even an actual 'place to belong' is stretching it a bit. I don't see any evidence from your post that you are referring to anything other than this website. I clicked on one of the choices when I came here and I use this website in accordance with how the admin/owner intends it, otherwise I expect to be booted. Mainly it's a vent, this website...I'm not under any illusion that this website *is* asperger syndrome, or my asperger syndrome, or that I can be beknighted (or not) as aspie here. Wonder how many un- or self-diagnosed people donate money for the new server needed...see where it gets murky?

I have carpal tunnel syndrome, self-diagnosed. See, there's this funny thing about carpal tunnel, which the nerves for four of your fingers run through. The pinky finger doesn't, though, its nerve runs separately down the hand. So you have all these unpleasant symptoms in your four fingers ( I include thumb), like numbness, but not in your pinky. I got it from years of factory work and finished myself off with a brief stint as a cake decorator. That particular symptom is so funky that you really can't mistake it for anything else. Interestingly, women who have extremely large breasts sometimes get numbness in the pinky along with back and neck pain, because of the anatomical structure but not in the rest of the fingers, opposite of carpal tunnel syndrome. When my factory friends got diagnosed, they mostly had surgery. Alot of times you have to have the surgery again. Me, I just quit my job as a cake decorator, and I'm careful not to trigger it with repetitive motion. No need to give a surgeon a house payment, create scar tissue and other impediments, and have to repeat the process when I can take care of it myself.

That's how I view AS, I gave psychiatry more than it's round of chances, it came up with several answers, all of which were wrong (well, seasonal affective disorder probably right). Being misdiagnosed a series of times tends to lessen your respect for the ability of other people to declare you who you are, no matter how many degrees they hold. I don't know any AS or HFA people in my real life, so none of that belonging stuff applies to me. As far as your reluctance to call yourself AS, it doesn't really matter. I never look at people's diagnostic status on here so I would never have known...I'm just not interested because in my view for every undiagnosed person here there is probably a misdiagnosed one as well. Some people here have openly admitted to trolling other boards so there is little reason to believe that isn't going on here alot too. In short it's just a website on the internet, it shouldn't be given any more weight than that.

I think that there are several reason why people self diagnose. I think the main reason is that people wonder why the 'just cannot fit in." Another reason is because other people point out certain traits which are investigated. There is also the reason that some people are looking for a place to belong as well. I think that the fact is that there has been much recent information published about autism that people have become more aware.

I also believe that the numbers are higher now due to the fact that the definition of autism has been broadened and include many, many more people. When I was diagnosed, it was widely thought that the odds of "having autism" was being less than 1 in 10000. Now that a certain fear mongering organization has been producing commercials, many people are looking into autism as a possibility.

I saw a special on CNN and it caught my attention that the child in it did alot of hand biting. My son did that up into his teen years - drawing blood often times from biting so hard. He could never explain to us why he did it, and he had scars on the back of one hand from so much biting. He has been unexplainable for us for most of his life - in some ways I relate to him and in others can't even communicate with him.

Anyway, that led me to reading more about autism and clearly seeing my son in the writings - clearly. That led to buying "Pretending to be Normal" but as I read my jaw dropped - the author could have been me. She said so many things that I'd experienced in my life and still do - some I read outloud to my husband and daughter and they were shocked. They asked if my picture was in that book.

I was so happy to learn about AS. It just made so much SENSE ---- FINALLY. After so many problems and so much energy going out just trying to pretend and always feeling so alone and so sure something was wrong with me that no one seemed to understand or share.... what a burden to carry and always feel inadequate.

I dove into learning about AS and was nearly giddy. I loved finding Wrong Planet - which my husband still marvels about because I have writings and had spoken often about the fact that I was somehow dropped onto the wrong planet. When I was a teen I attempted suicide and asked God to forgive me because I wasn't trying to actually be dead, I was trying to reverse the error that somehow placed me on the wrong planet. So great name for this forum.

Anyway, that's my bit. I don't want to be Asperger, but I embrace it and feel stronger with so many here who understand. And the awareness in the mainstream is really going up. Not that it's popular, but it's more understood than before and that's very positive. I actually feel so much more comfortable in my own skin now, and most of the time I feel like it's okay to be me. That's a LOT to be able to say.

PS - my son is 26 and says he doesn't believe he's autistic or aspergers or anything. He's not fully functional, lives here at home. He does ask questions about AS and points out people that he believes are Asperger (on tv and in movies) but still denies that he is. I've wanted to get a formal diagnosis for him just to have another opinion that he may take more seriously than mine.

Getting dx with AS was like being born......painful, tiring, confrontational, suffocating.......and liberating.

2 years of intensive therapy with both psychologist and psychiatrist after a massive burnout, where I lost my job, dropped out of uni and spent a month in a psych unit and a following 6 months in a severe depression.

When my T discussed it with me a year ago, I told her it was ridiculous. My shrinks have had to argue their case to the bone. I have been officially dx for about 3 months now.

The dx found me and therapy is going in a direction now that I can understand and some amazing things have come to light. I would never have thought that I was dealing with AS as I would no sooner have woken up and thought I had cancer, Tourettes, OCD or some other condition. I have a vast history of mental health issues that were misdiagnosed. Due to my obvious trauma at having a terrible mental health experience spanning 20 years, it took some serious convincing that it was AS.

Science for me is everything. The scientific process is very important to me. I had to go through painful and long-term therapy and psychometric testing, introspection and dissection to reach some scientific premise for the dx. I am also fortunate that I have very good shrinks. I also have LFA in my family(dx). The pieces of evidence fit.

Mics

My son was placed in a preschool for the developmentally delayed because he didn't talk. The school had him assessed when he was 5 and he was diagnosed with Asperger's Syndrome. I thought it referred to his sensory sensitivity. I started reading about it and like many others started recognizing myself. I was a child many years before any form of higher functioning autism was considered but I was placed in therapy in 3rd grade because I was "maladjusted" and unable to socialize. My mother said I did not cry to be held as an infant and did not talk as a toddler. At 17, I was provisionally diagnosed with Schizoid personality Disorder. I didn't have my first "real" boyfriend until I was 40 years old (That one wasn't real either but it lasted about a year and a half). When I started reading about AS and saw the diagnostic criteria, I thought maybe. Then I read Carol Gray and Tony Attwood's Discovery Criteria and found more specific similarities. Eventually I found Wrong Planet and over the past year have been continually amazed at the myriad ways that my particular idiosyncrasies match other members. I'm old enough to know what my struggles are and even yesterday a problem that has been a part of me as long as I can remember was mentioned.Inertia, which has been the bane of my life. I never knew it was associated with AS. I have had struggles that I have never been able to overcome. You can either consider each symptom and come up with a separate diagnosis for each(and they have), but if you find something that covers all of it, then that is the logical choice. I don't have the means to be formally diagnosed and at least in my area, the professionals do not know how AS manifests in adults. I used to want to belong in real life but now I recognize it's beyond my capability and I also realize how any attempt will exhaust me. Meh, I did not go looking for an explanation for myself. I started reading for my son and found myself. And in conclusion, blah blah blah,blah blah blah.

I responded to the question here with "self-diagnosed" because there was no entry for "too broke to afford a psychiatrist, but diagnosed by everyone around me".

AS was first brought to my attention when the article on "Geek Syndrome" was published in Newsweek (IIRC), back in '02. My sister read the article, put the magazine down, and said, "So THAT'S what's wrong with Jon!"

When I heard about this, I began researching it carefully (as is my wont - is reading perchance a form of stimming? I know it helps me calm down). I even found a copy of the DSM-IV TR in the local Border's, and read the description there. (I also read a few others, because abnormal psychology is one of my special interests.) When my wife went there and read the entry, she told me she was surprised that they hadn't illustrated it with my picture.

Since then, I've suggested the possibility to a few people. None have disbelieved, or expressed any surprise at the idea. And now I may finally be broke enough to qualify for medical care from the state (assuming the budget gets passed soon, so the governor doesn't have to eliminate the program altogether for lack of funding), so I might be able to get a more official diagnosis soon...

I think the initial question and the slant the writer puts on those who self diagnose is really a bit "off". Basically I don't see a difference between the motivation for self diagnosis and the motivation for "official" diagnosis - which would be to get a better understanding of how you function and perhaps connect with others who function in similar ways. As in many/most situations diagnosis costs money a majro difference might be tht people with "official"diagnosis have more money.
this question seems to echo the joke about about not wanting to belong to any club that would have you - it is saying that if you want to belong to this club, there is something the matter with you which means you don't really belong here.

I think it's only natural for those of us who have been outcasts and social misfits our entire lives to have the desire to seek and search out the reasons behind the social disconnect. And when our research leads us to autism, many of us are able for the first time come face-to-face with who we really are.

I've read on more than one occasion that some psychiatrists and psychologists actually use the same self-administered tests and questionnaires to determine if their patients are on the spectrum that many of the self-diagnosed Aspies do.

And so it seems logical to me that most of the people who are self-diagnosed with Asperger's have a very good reason to believe that they are indeed on the spectrum.

Our experiences are somewhat the same. Wasn't it great to find all of these people here who are more LIKE you than NOT? That was a brand new experience for me. All of my life I find people to be so unlike me.

What about Inertia did you read here recently?