"Autism Self-Diagnosis Is Not Special Snowflake Syndrome"

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Indeed, this again - the perennial weed in the garden of autism, which if ignored will damage the beautiful plants by denying them space and light...

I'm generally self diagnosed, and, as you have likely read, seeking diagnosis. I stumbled upon Asperger's, and then ASD clumsily. I'm almost 33, and have been resigned to being the perpetual misfit and burden for not being normal. Looking back, as well as discovering things about my childhood that I had forgotten, I am shocked that my parents did not have me evaluated for something, but they didn't, likely because of their own fear. Growing up being insulted and blamed for lying (aka misunderstanding), arguing (aka correcting erroneous facts), being lazy in school (aka executive dysfunction?), disrespectful (aka answering rhetoric literally), etcetera, etcetera. Feeling completely alone in the world even married to a man that loves me, despite his frustration at my ability to 'start trouble', 'open cans of worms', and 'inability to blend in'.

Coming here is the first time in my 33 years where I have not felt like a complete failure at life, where I have felt like there is someone else out there who can understand how much of a struggle every day is, just trying to make it through without completely screwing up in some way. Most days I can't get off the couch beyond taking care of the bare minimums for myself and my son because communicating clearly is draining.

Autism? Never would have entertained the thought. I've worked (briefly) in special education. (Fired, for what it's worth, because I didn't fulfill their contradictory job description, but also, by the overheard comments of the teachers, because I was too similar to some of the students of my same age). Not until meeting other diagnosed adults did I realize the breadth of the spectrum.

My primary doctor, whom I approached for a referral for diagnosis, asked me if I was trying to find a reason to excuse my bad behaviors, if I was trying to force myself into this. While there may be positive aspects of this diagnosis, the only thing I could think of was "Why would ANYONE willingly CHOOSE to live life like this? Why would anyone choose THIS?" I've always wanted to fit in. I have always failed. Through school, college, work, and as an adult in friendships and even familial relationships. I don't need the disability, the SSI, the special treatment, the belonging to a 'special club'. I need to know WHY I am so different that I live my life constantly apologizing for myself, yet unable to do better. This has been an 18 month long period that has brought me here, to this forum. Six months just to work up the courage to post for fear of being seen as a pretender, a 'wannabe'.

One day I will be more succinct in my writing. One day, I hope, I won't feel the need to excessively explain my thoughts in a desperate desire not to offend. Seeking this diagnosis is MY first step to that day. This diagnosis is my 'light at the end of the tunnel' signalling that I am not the sinful, horrible person I have been told I am, that "You haven't been through anything you did not choose" (said to me today, in fact, by family).

Not for 'special snowflake' status. I'm glad none of you treat me like I am a 'special snowflake'. All I have experienced in my brief foray here has been patience, and, if not acceptance, tolerance.

I'm rambling, I'm sorry.

No need for that apology, what you wrote is heartfelt and very meaningful. Thank you for sharing such an acute account of your experience.

People like yourself are one of the reasons that I continually respond to threads which contain material aggressive toward people who though not formally diagnosed have come here and found for the very first time in their lives, a sense of being known, a sense of belonging, a sense of finally being understood. There is no good reason at all to try and deny the self-aware that experience, which can be life-changing (as I hope it will be for you). Don't let anyone take the gains of coming here away from you; if they can't see beyond their own formal diagnosis to the bigger picture in this community, that's their problem, not yours. I hope you find that your new home here is hospitable and enlightening in many ways.

This forum has been education in a way that none of the books, blogs, reports, and more have been. Similar, I would assume, to why doctors go through med school, and then years of clinical education as book learning does not equate immersion.

I am very grateful for being accepted here as much as I have been.

How the hell did you just do that?

*walks off shaking my head in sheer impossible disbelief

I clicked edit instead of quote! (Moderators have access to member posts if they need to edit out rulebreaking content and can also leave an explanatory comment in the member's post if they want to). Not realising my mistake, I commented and posted. I could have edited it out though that would have left the original poster wondering why it was edited in the first place!

The alternative explanation: B19 has magic powers! (I prefer this one!)

That's a very good suggestion.

To call it diagnosis presupposes far more accuracy in the evaluation.

A self-assessment on the other hand makes it clear there is possibly a very reasonable doubt.

Oh, so you are a moderator...that explains it. I just didn't see 'moderator' in your title and thought you were just another board member.
There's a logical answer for everything. lolz

Neither. I was diagnosed in adulthood and Asperger's has been my only diagnosis. I'm not the only one. It's really not an either/or, I have no idea where you got that kind of idea from.

I was also diagnosed as adult with one assessment/diagnosis and no other assessments or diagnoses before or after.

We all need to stop throwing s**t around this weed. s**t's fertile and helps the weed to grow. It'd be best left to wither.

I am self assessed as being on the Broad Autistic Phenotype .
I didn't recover or cope in a regular way after a burnout period; I had to face some practicalities when my standard work-arounds were not healthy or possible anymore due to long term illness.
Its not about being a special snowflake, its much more basic than that, its about survival, and knowledge is the game changer which is linked to the ability to thrive.
I know why I have felt so stressed and confused, anxious and depressed for my entire life, and now I can live in a healthier way, in sync with my natural way of being, instead of draining my energy trying to fix traits that were never broken.

I think anyone who buys into the rather spiteful belief that someone wants to "be a special snowflake" and that person is "using" autism -- or a self-guess of autism -- as their cheap ticket to being a "special snowflake," or even as an "excuse" for "bad behavior" -- is just enjoying being a badly behaved ass themselves, in this instance.

Because, WHO in the world would WANT to hobble themselves with a label which:

1) Still comes with massive misunderstanding of the negative kind, in the NT world out there.

2) Is of a condition that comes with massive challenges and struggles and will always be that way for a person.

On the one hand, yes there are people with Munchhausen syndrome or some people who otherwise have some kind of pathology-caused desire to "have" something they wish to receive some kind of pity for. I'm not denying there are people with this misguided need, which is an illness.

But I would hazard a guess that the overwhelming majority of adults who find that they recognize themselves in autistic traits are genuinely coming to that conclusion for genuine reasons -- simply a need to understand themselves, having been all too aware that they had struggles they could not understand in themselves.

Also, I think the special snowflake accusation is very much something aimed at what I call the "lost generations" -- those of us older ones whom some younger ones cast suspicion on merely because they were not diagnosed as a child. Well, the resounding statement to that, which in a sense needs to be "stickied" into the zeitgeist, is: "THERE WAS NO diagnosis when we were young."

So, in a sense we older ones had no choice but to -- initially at least -- "self-diagnose" if only in the sense that one discovers information and recognizes there is a strong possibility it's the cause of traits you've had all your life but nobody figured it out because nobody WAS figuring it out in the era in which your diagnosable childhood years were taking place.

It's also overlooked that a person who needs to seek an evaluation can't do that unless they first DO in fact "self diagnose." If you aren't acutely aware that you're having strange symptoms and then someone tells you, or a web lookup points to, diabetes, you can't get to a doctor and find out for sure. You will just keep on wondering why your body is feeling bad. It takes YOU to find out "Wait a minute, it says here these things point to diabetes," for you to then go ahead and take the steps that remove all doubt, ie, see a specialist.


Some choose not to for a plethora of reasons, but what is often forgotten is that many do -- and discover that a specialist finds the same conclusion their lay-person suspicions found, that they have an ASD sure enough. This was my situation.

Of my situation I'll also tell you that the very first time I stumbled across a description of Asperger's as much as eight or nine years ago -- and I really did figuratively stumble, I wasn't "looking" to have something, I was just browsing online articles and news features -- my initial reaction in finding that things matched me was in fact horror.

Don't get me wrong, that's changed, that's not what I feel NOW. But at first just recognizing that all these traits seem to answer a lot of questions and struggles I'd had all my life since my earliest childhood experiences, actually filled me with recoiling horror.

Not "Ooh, grab onto this, this makes me a Special Snowflake, YAY!!"

I was the opposite. I was more like "Oh god, oh god. WTF? What the F??? No. Just no. Can't be. But...oh christ. Explains this, this, that, this, that.....oh my god. But no. Just f*****g no. AUTISM???????? I'm not f*****g AUTISTIC. WTF. Just can't be. But wait....wtf..."

I'd spent my whole life knowing I was weird as all hell yet because in my era nobody even addressed quite serious struggles I was having, I went under the radar until I saw myself in a freaking news article about a condition I myself thought was only severe, and since I wasn't "like that" then that couldn't be anything to do with me. It then took me YEARS to stop running away from even just the suspicion that I may be somewhere on the autism spectrum. I finally pursued evaluations at the end of last year, but when you think how I first had that thunderbolt moment of even suspecting "this might be me," as long ago as 2006 or 7, that's a long time to run away from being a special snowflake. I was running away as hard as I could.

I don't think my now-diagnosis makes me special, or is even an excuse for "bad behavior." When I'm a b***h to someone I take full responsibility that that's ME choosing to give someone a piece of my mind, thank you very much.

What I DO attribute to my autism is when I've overloaded and have outbursts I can't control -- usually when I've come home after a horrible day and then start screaming at nobody but the four walls because the remote won't work, the last straw in a day where larger issues actually started the stress to mount.

Long post to explain short answer -- I not only do not view ever having begun to think I may be on the spectrum as a way to be "special," but in fact I was so upset to think I might be on the spectrum that I RAN from looking into it/ getting evaluated for almost a decade of my adult life.

I think there's a difference between suspecting and diagnosing yourself. That goes for everything. So you'd put a symptom into webmd and it gives a list of possibilities. And it comes up as diabetes at the top. So you can suspect you have diabetes, so go to the doctor. But what some will do is decide they have it for themselves and won't listen to the doctors telling them they don't. First is someone suspecting, second is someone diagnosing themself. I see absolutely no problem in suspecting something and finding out from a qualified doctor. But what I do see a problem in is ignoring doctors. Yes not all know about HFA/AS in adults but if you ignore one who does and find reasons they're not qualified enough to diagnose you and excuses why they were wrong then I do see a problem. I think it's an important distinction.

They are making excuses and just not trying hard enough AGAIN. In populated areas with hard work you have a good chance find a qualified clinician. In many areas they just not there. And even if you find one with insurence etc. they are often just not affordable. Remember we are talking about group that has serious under and underemployment problems, more then people with other disabilities.

Let's talk about people who ignore doctors/ choose not to seek a proffessional diagnosis. Services are scarce or not geared towered older adults. Less then 2 percent of resources in America goes towered research and services for adults. In the United Kingdom for a number of years there has been a concerted effort to help Autistic Adults all though the situation is still far from good. The less then 2 percent figure in the states are a few years old. I do see an effort recently to help young adults as people realize that those diagnosed in the early period of expanding spectrum definitions are becoming adults. There are some companies wanting hire autistics but they seem to want hire them for less then minimimum wage as that is legal or they want the stereotyped genius types. Dispite this, fear of employers finding out is legitimate. Privacy is for the most part history, if you you do not believe that you are niave. I know by law it illegal to discriminate against disabled people and employers are mandated to find accomodations. Most employers today want group oriented conformists because of legitimate fears of theirs offices bieng shot up and fears of bieng sued. Age discrimination is a big issue also. Companies hire lawyers and HR people expert of finding loopholes in anti descrimination laws and regulations.

I guess it seems to a lot of you we are just too touchy, should not we have learned to be tougher by now? Possibly. You see before the concept of the spectrum excuse makers, faking our problems for attention was the informal diagnosis for us, and just toughen up and try harder up like everybody else was the recommended treatment. So maybe the self diagnosis are making decisions because they are too sensitive maybe, or just maybe knowledge from experience has something to do with it. We are now living in an era of safe spaces and trigger warnings and these trends have often gone to far. But that does not mean the original ideas were all bad or older adults do not need a little bit of it sometimes.

A diagnosis is a diagnosis, no matter who makes it. I'm sure that the majority of people who suspect or believe that they are on the spectrum would like to have an "official" diagnosis but there are a whole load of different reasons that can prevent some people from getting one. For a start not everybody lives in a country that actually has an autism diagnosis pathway. Many countries don't even recognize that autism exists or if they do they treat it as a mental health issue that requires institutionalization. I'm also quite certain that there are places on this planet where someone with autism would be treated as if they were possessed by evil spirits or cursed by witches, they certainly wouldn't be handed a nice piece of paper with an official diagnosis on it.

Even in places were a diagnosis pathway does exist there are other barriers. In some places that barrier is simply a matter of cost, diagnosis can be expensive. And what do you get at the end of it? Piece of mind? Sure, you know why you act and think the way that you do, you have a name for it, which can be very useful to explain your condition to other people, for whatever reasons. You also get a piece of paper that will officially declare that you are on the spectrum. That is information which you would then be required to declare in certain circumstances and which could also be used against you, in job selections or custody proceedings. In other countries, with free health care, cost is not a factor but instead long waiting times for diagnosis and the need to be initially referred for diagnosis by a family GP (who might have little to no understanding of autism) present their own barriers.
Of course some fortunate people do manage to overcome the barriers to diagnosis and they do get their piece of official paper. How this then gives them the right to feel superior to people who haven't been so fortunate totally escapes me. I'm sure that someone who has spent days, months, perhaps years, researching autism online, or in books, magazines and DVDs, and has reached the conclusion that they meet the criteria has as much chance of being correct as someone who hands over $1000 to a psychologists who, in some cases will simply sign a piece of paper, primarily motivated by their fee. The whole official diagnosis process is subject to so many variations and subjective opinions, there is no simply DNA test (yet) which would conclusively prove autism. Diagnosis are a matter of opinion and whether that opinion is informed by personal research or as part of a clinician's job description at the end of the day it's still just an opinion.

Finally remember that this is the internet. Very often things and people are not what they seem, claim or purport to be...

That guy on the forum with the official diagnosis? How do you know that he has one? Have you seen it? You don't know, you are simply accepting his claim at face value. My question is then, if you are prepared to accept someone's unsupported claim of having an official diagnosis why can't you also accept someone else's claim of having an unofficial one? Surely the person in question is a better judge of their own status than a clinician with an hour to spare or a judgmental adversary on a forum? Judge people on their actions, not on the labels that they choose to wear. After all I've got Calvin Klein underpants on but I'm not Calvin Klein, I've never even met him

Last edited by Ben_Is_My_Only_God on 15 Nov 2015, 1:02 pm, edited 1 time in total.