Is self-diagnosis reliable?

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@B9

{Disclaimer: not dx'ed}

There are many reasons a person may have early behavior missed. As an infant I was dx'ed with "failure to thrive" (wouldn't nurse, losing weight, didn't like to be touched, etc). This was blamed on my mother being neglectful. That doesn't fit her, but the accusation was made and it left her with a deep hatred and mistrust psych professionals; so there was no way she'd put me or herself in front of a shrink after that. Add in no siblings to compare to, both parents having traits, and no extended family around, and from thier POV everything was normal. I expect that if interviewed by a psych today my mother's response would be "everything was perfectly, totally normal (and screw you for asking)." (One of many reasons I'm not too interested in getting evaluated.) Not everyone's home/upbringing was an ideal laboratory for evaluation.

so many of us who are a little older are telling the same story over and over and over again. We have parallel experiences that deserve to be acknowledged and documented.

Last edited by millie on 09 Jun 2009, 4:37 pm, edited 1 time in total.

Excellent!


You have to be kidding me.


You could be describing me when i was a kid. I was called an "Old Soul" i much preferred adult company to children, but really preferred the company of my own thoughts. I'm still happiest when i'm off in my own world, i can't do that so much with 2 little kids though, that's definitely forced me to the ground more than anything else. I cried almost my entire school life before age 10.

It was indeed noticed about me my whole life, by my whole family and extended family/friends and teachers. Very much noticed. But I didn't have your average childhood and we simply didn't have the resources available to us. Mum always knew i was profoundly different, and now she says she just didn't know about Aspergers back then (i'm 25 so i'm talking late 80's early 90's in rural New Zealand) thankfully my mum is AMAZING and she took care of me and helped me to learn to cope as best she could and did an amazing job.

They attributed some things to my poor eye sight which are now obviously the AS and not the eye sight. I was called an Old soul, Emma Dilemma (hense my username here), Different, Weird, Unusual, Fairly child and often people would just look at me in wonder and perplexity and just not know WHAT to do with/about me. I was happiest when just left to my own world and i often was, mum says it was hard because i was so quiet and so easily forgotten because i didn't make a sound or a fuss of anything, i didn't do anything really except go away to "Emmaland" mum used to have to remind herself to spend time with me because it was so easy to get caught up with everything else and just forget that quiet little thing playing alone somewhere (and my sisters were both very demanding) she used to talk to my aunty and they would worry that one day i just wouldn't come back from that place i used to go to (my own world)
I used to go right up to peoples faces and stare at them while they were talking to my mum, if they said anything to me i would become uncomfortable and shy and not respond, yet i had my face RIGHT next to theirs staring at them, this is well after i got glasses so faces weren't new to me. I still love to stare, people fascinate me. Some people were uncomfortable with it and would ask my mum what to do LOL and some people would just laugh and say how cute i was.
Not only all of that (and the much more that i haven't mentioned because it's none of your business) but you can actually SEE it in many of my childhood pictures.

Anyway, all of that to say that it's not like people like me who are self diagnosed have just turned 25 and taken a quiz that said we may be aspies and gone "OMG, the quiz said i'm an aspie. Hi my name is Emma and i am an Aspie!" so i wish people would stop with the whole "Self diagnosis is BS" and "It would have been noticed when you were a kid" crap when they don't actually have any clue HOW we have come to our self diagnosed conclusion. You of all people should know that you just cannot generalize and put any group of people in a box together and label it! Yes some people are blowing it out their bums but that doesn't mean you can wave your hand and dismiss every self diagnosis, it just means that some people blow it out their bums.

EDIT: As for the OP question. Is self diagnosis reliable. Well, it depends what it's based on, sometimes yes, sometimes no.

Apple_in_my_Eye, you bring up a few good points. Mothers are often blamed for things before professionals will entertain the idea of something actually being off with the child, many things can be missed like that. And then, "Normal" is different for everyone, that's one of the things i struggle with with my daughter is "is that normal 4 year old stuff?" i don't know if the things she does are normal 4 year old stuff or not, i may not be noticing some things about her that the evaluating Dr's would want to know and then i may be noticing stuff that is actually normal 4 year old stuff, i just don't KNOW and that's why i run things by other people who have experience or knowledge of ASD's so i can sift through my idea of Normal vs. the general idea of normal.

Nicks, You seem to only ever have been taught the generalized education model of what science is rather then the more complex more accurate academic model of science. I don't mean this as an ad hom, I'm just trying to explain why it seems like you are right. You are right as long as you stop exploring how these things work at the pre high school level of scientific understanding. If I have a list of all cities on the planet, I can deduce from this list that I am in California by virtue of the fact that I am encountering cities that could only be in California. Science is about making tentative assumptions about the world, and as long as nobody falsifies the basic assumption you keep building out from it to establish new tentative assumptions. The whole thing is a house of cards that is designed to be instable. When it becomes stable it stagnates and refuses to adapt to newer more accurate data, so we encourage the cutting edge to explore the boundary of what is possible. There is no such thing as that which is not falsifiable, only that which has not been established in a falsifiable context.

Those twin studies you reference? Some have indicated that what is going on is there is a set of genetic traits that get activated by an environmental condition. Zygotal twins can have the same genetic structure differences, but unless there is a specific environmental factor leading to an improper handling of testosterone during the gestational period relating to gendering, they will end up NT with a few of the traits related to ASD that are considered normal through out gen. pop. At the start of the gendering state the womb begins introducing testosterone to the fetus and this where it is determined if the fetus remains female or becomes male by the time it comes to term. Male becoming fetus will be exposed to more testosterone, giving more oppurtunity for the testosterone to end up stimulating the growth of a specific sensory cognition area that is the common link amongst ASD.

This is all straight out of neurological peer review journals. The peer review process takes YEARS for other people to figure out a way to test against newer discoveries, then more years to convince somebody to fund it, and then more years to actually follow through on all of the lab work, then submit your study for review. Over time we end up with enough studies saying the same thing seems to be true. Then somebody comes along and says hey I just tried changing a variable we'd been ignoring and using as a control and found some pretty crazy stuff that indicates we have been shortsighted about this entire thing. Such as "hey guys, you keep saying it is refrigerator moms causing all these autistic kids, but I keep finding parents that don't fit that pattern, maybe in 1994 we should incorporate the stuff that guy Asperger talks about."

You seem to persist under the misconception of "The Scientific Method" and falsifiability making science. It is the pursuit of falsifiabilty that is science. not the falsification process itself. The entirety of Science has a gigantic caveat in front of it. Everything is tentative. It is not about the absolute word of god truth, no exceptions. It is about good enough to form a workable model. If you are in the area of applied sciences, specifically a mental health clinician, then you are more concerned about the deductive falsification side of the equation. If you are in the area of theoretical sciences, specifically a mental health neurological researcher, then you are more concerned about the inductive hypothetico side of the equation.

You can still today here in America make an appointment with your GP, get a referral to a Psychologist, and end up talking to a Freudian schooled person. They are incredibly smart about the modeling of the mind as Freud depicted it, but they expect me to have a refrigerator mom and if I don't, then what I have is not known as Autism. So you make another appointment and talk to an Occupational Therapist who is trained in the school of Asperger's Syndrome needs Assistive Behavioral Therapy, but we believe in restraint methods where we punish and prevent the child from performing actions we decide are negative from the NT perspective, not understanding that it is like having somebody constantly cover your mouth when you try and breathe from it instead of through your nose and telling you they are doing it for your own good.
So you make another appointment with a Psychiatrist who believes that process is traumatic to the individual, and so they do an fMRI and notice a pattern to the blood flow, and try and use psychoactive medications they are familiar with to treat you, but they are working from a foundation of knowledge based on how these psychoactives impact the neurochemistry of an NT individual not an ASD individual, and so none of the drugs perform within the normal range, because you are using them on a patient outside the accounted for range. So finally you make an appointment with a neurologist, who does another fMRI, an EEG or two, a couple CT scans. He establishes that you fit a brain chemistry pattern of people that have had the same experience. They explain to you everything about how and why those previous appointments came to have the perspectives they did on the same medical facts of the same patient. And then they explain how they don't really have any solid solutions for you, that isn't really the role they play in medicine. They suggest a more rigorous focus on the meditative techniques that you have found useful so far.

What's a refrigerator mom?

^ Bruno Bettelheim's research....A mother that offers no emotional solace to her baby and is cold and stony and uncaring.
in the 50's it was assumed kids who presented with ASD's did so because of a traumatic reaction to their refrigerator mums.

THere is some excellent footage of Temple Grandin's mother talking about being accused of being a refrigerator mother. Fortunately for cattle, the world and the autism community, she ignored the label and helped Temple achieve and grow and reach her full potential.

Oh ok! Thanks.

The "let's just blame the mother" idea, it's not as prevalent as it was back then but i've been told twice now by a GP and a General Psychologist that i'm not *firm* enough in my parenting and that's why my daughter is the way she is (not yet evaluated but suspected not only by myself, to be on the higher functioning end of the spectrum)

EDIT: Just watching some Temple Grandin interviews on YouTube now thanks. She said something that rings true to me that a lot of autistic people (her included) fear is their main emotion. Rings true to my daughter as well actually.

Neat lady!

Last edited by Dilemma on 09 Jun 2009, 5:05 pm, edited 1 time in total.

If-I-had-not-self-diagnosed,-I-would-have-ended-up-on-life-long-medication-for-one-or-more-conditions-that-I-do-not-have.

My-parents-knew-I-was-different-to-my-sister,-but-they-certainly-did-not-consider-that-there-was-anything-wrong-with-a-baby-that-never-cried,-and-made-no-demands-for-attention-whatsoever.--My-parents-were-relieved-rather-than-worried-at-the-lack-of-interaction-on-part-(which-they-saw-as-being-a-really-"good"-baby).

My-mother-reports-that-I-was-an-extremely-"good"-baby,-elaborates-this-as-my-being-extremely-passive,-and-on-further-question-reports-that-I-never-cried-or-babbled-or-responded-to-"peek-a-boo"-games,-indeed-she-is-unable-to-recall-any-interaction-on-my-part-as-a-baby.

I-was-sent-for-assessment,-years-before-AS-was-in-the-DSM-or-the-ICD.--No-answer-was-arrived-at,-not-surprising-since-the-right-answer-was-not-within-the-scope-of-inquiry-at-that-time.

Being-colour-blind-is-from-birth,-but-this-condition-can-remain-over-looked-well-into-adulthood.


Noticed-as-what-exactly?

--Someone-who-annoys-the-crap-out-of-everyone,-achieves-well-under-what-appears-to-be-their-ability,-appears-to-constantly-challenge-and-disrespect-authority,-appears-to-intentionally-ignore-the-"unwritten/unspoken"-rules-just-to-be-a-nuisance-to-others,-appears-to-try-to-"dominate"--conversations-by-turning-it-into-lecture-(about-something-they've-been-rattling-on-about-for-years-on-end-without-let-up-or-variation-in-the-content-of-the-lectures),-trying-to-assert-rules-or-correct-others,-asking-impossible-and-ridiculous-questions,-or-blurting-out-some-socially-unacceptable-observations,-all-while-appearing-to-pretend-they-do-not-even-know-what-that-they-are-doing-anything-wrong-at-all?


I-hope-not.--There-is-nothing-malicious-or-unreasonable-about-your-opinion/post,-so-if-it-has-made-you-any-enemies,-it's-their-problem-not-yours.

yes. fear and terror. they are my main states actually.
good luck with your daughter.

Mine too! Fear and Anxiety, if there's one thing most people know about me, it's that i'm scared of everything

Thanks

This can stem from increased awareness as well as cultures that have a propensity for shoving people too different into institutions. That has been the constant threat of my life, when I make a point too strongly too soon amongst an NT crowd, they assume I must be delusional, it just isn't possible for somebody to be able to predict that this far in advance. By the time it comes true they won't even remember you predicted it, or seldom enough that they call it coincidence.

Their loss. If they didn't try to understand, that's their fault.

It isn't a fault thing though. Largely society has no idea there is something there for them to try and understand. I operate my life on the assumption that people are trying the very best they can. I refuse to be cynical and try and look for ulterior motives in everything, I just don't believe people are like that on a large enough scale for me to even bother thinking about it. Never attribute to malice that which can be explained by incompetence. The blame falls on our species as a whole, and we all take as much ownership of these things as we can bear to so that we can advance beyond them.

We want an open exchange of ideas, we want increased understanding, we want to be a part of something greater than ourselves. Every human being is just trying to be the best Self that they can be given the environment available to them. Change the environment and the individual will respond accordingly.

My counsellor is very enthusiastic about the idea about me going for a diagnosis. She has plenty of contacts in the psychiatric field who can perform AS diagnoses, and for months she has been suggesting I go for one. She seems more excited and keen about it than I am.

I kind of dont really care that much whether I have it or not, I will still be me, I am more concerned about working with the specific issues I have such as sensory issues, social etc. I am sort of curious as to what kind of diagnosis I would receive but I am not sure if it would serve a useful purpose for me.

There is also the big chance I will get a bit of paper saying "You have PDD-NOS" and what would I do with that? Get it framed? Noone even knows what that is anyway.

Keep in mind that you will have to talk about all the things that make you the least comfortable to talk about because that is what the diagnosis is based on. It is an intensely unsettling affair and I don't care how non judgmental you pretend to be, that is exactly what is happening, judgement is being passed on the experiences of an individual. I couldn't even begin to count the number of people I have had to help recover from being diagnosed.