Critical of self diagnosis - you shouldn't be

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http://www.theguardian.com/society/2012 ... s-children

Link to article that cites the number of girls misdiagnosed as not having autism when they actually did (missed diagnosis) as 42%.
And not only was the autism missed for them - they were also wrongly diagnosed as having other things they didn't have.

My personal view - which I know will not find much support from some here, but that's ok - is that the rate of missed diagnosis and misdiagnosis for adult women on the spectrum is probably higher in professional diagnosis than the adult women who self-diagnose.

But I don't think accuracy of diagnosis registers with or matters very much to supporters of "professional only diagnosis is valid", because there seems to other factors at work, perhaps an emotional investment allied to a sense of legitimacy attached to professional diagnosis for some. Not all.

In New Zealand you can seek help and services from the main support and service organisation whether you are self or other diagnosed.
Peer support groups here don't require proof of clinical diagnosis - I would be appalled and very vocal if they did. I have no interest whatsoever in getting diagnosed so that I can "seek out a psychologist", I only have to look in the mirror to find one (albeit retired now). I have met quite a few self-diagnosed ASD women and in my view their accuracy was 100%. However I am talking about women, not adolescents or young adults.

The point I think needs to be made at this point in this thread is simple:

Autism is not a formal diagnosis. It is a way of being, a way of living, a way of perceiving, a way of experiencing.

The older you get, generally, the better you develop qualities that lend much greater depth to self perception, insight and understanding. The older you get, the less you need external validation, generally, and you have more confidence in your own abilities and more knowledge and experience to draw upon in applying analysis and discrimination.

If you lack the abilities or confidence in your perceptions, and a professional diagnosis would feel validating to you, then get one. I hope it goes well for you and that you don't get missed and misdiagnosed, which may invalidate you more, rather than help. If you want a professional diagnosis to get financial income, and have no other option, then go for it.

I don't need that income, outer validation, legitimisation. And I am not alone. As I said earlier - it's not a competition, a contest of validity. I appreciate that some people with a very shaky sense of self may find a professional diagnosis enormously helpful. To project this onto everyone else who is self-diagnosed seems to me gratuitous in the extreme. If someone said to me that I wasn't really on the spectrum because I hadn't been formally diagnosed, I would be grossly insulted at their presumption and arrogance.

Overall, I am glad this topic has been given a thorough airing though in this thread and both sides of the issue have been fairly canvassed.

We may be speaking of different definitions of "valid". One of the definitions of the word "valid" is "legally binding". Another is "legally official or acceptable." When I use the word "valid" when talking about diagnostic status, this is what I mean. In this particular case I am not using it in the common way some people use the word when they use it to mean "have been made to feel heard or acknowledged." I think this is where this particular misunderstanding is coming from.

I never once said nor have I ever believed that someone who is not professionally diagnosed can't call herself Autistic. I did for almost three years. And I don't like to speak for others but as far as I know, Fnord has never said that someone who is not professionally diagnosed can't call himself Autistic either. What he did say is that a professional diagnosis is the only way to make it valid and I also believe he means it in the sense of "legally binding." Fnord, if that is not what you mean, please correct me. But that is how I mean it.

There is nothing about that statement that is not supportive. It's just a fact. My GP refused to sign my Special Olympics application because at the time I did not have an official diagnosis for HFA/Asperger/s. The Special Olympics application is a legally binding document and he could have lost his medical license if he had signed that I have HFA without an official diagnosis if a dispute about my SO eligibility had come up in court. This is what we are talking about when we say "valid." It is not a critical statement with the intention of not supporting people. If I had not been blessed and lucky enough to be able to get the diagnosis the way I got it I would still be unofficially diagnosed and I would still 100% agree that that unofficial diagnosis without the paper to back it up would prevent legal validation of my diagnosis. I would still be Autistic and would still call myself that, I would just have to remember that I might have trouble if I needed to have my Autism recognized in a legally binding way like with the Special Olympics application.

I also believe that people should be honest about their diagnostic status when it is important and I have always done that, but it is highly unlikely that that would stand up in court without an official diagnosis. So now that I have an official diagnosis, if people want to legally challenge my eligibility to be a Special Olympics athlete, they can't win the case. But if anyone wanted to challenge me being an athlete and had taken me to court, without the official diagnosis, I would have lost the case and the doctor who signed the application would have been at risk.

I actually had someone recently ask me what qualifies me to be a Special Olympics athlete and I got nervous because I did not have the diagnosis then. Because of my high level of functioning and my ability to speak well, unlike most of the other athletes in my county my disability is not obvious and if you don't really know me you might easily think I am NT. So I can understand how people, especially parents of athletes, would wonder what I am doing there if I am not working as a volunteer and wonder why I am allowed to compete. But that is just one example of what it means to have the legally binding validity and why it could be important.

Someone even challenged my eligibility to be an SO athlete not too long ago right here on WP on the basis that I am high functioning and argued that point for quite some time. It was kind of funny because I was 100% overly honest and cautious with the SO staff letting them know the all the details of my diagnostic status. And a doctor who knew me before my GP did signed my application. So I did not become an athlete by sneaking in. I came in with full honest disclosure about my situation. Well the Special Olympics staff in my county welcomed me with open arms and actually encouraged and convinced me to join even though I was reluctant because I am so high functioning and did not have an official diagnosis at the time. It was actually by being an athlete that I met the right person at an SO practice and she led me to the OVR where I got my diagnosis. But the funny part is that even though SO welcomed me in my then situation, the person on WP who has never met me and only knows me from here, adamantly argued my SO eligibility. When I told the SO rep who had recruited me about that she said to go back and correct that member. But now all I have to do is show that signed application and now any doctor has to sign it as long as I pass the physical because I now have the official diagnosis to back up my claim to Autism.

And just so you know, I like that member very much and have no problem with that member at all. Even when the person was arguing my SO eligibility I had no problems with that member because I know it was not from ill intent, the person just did not accurately know how SO worked.

But many people may not need their diagnoses to be able to stand up in court so for them a self diagnosis is perfectly fine and I have no issues with that whatsoever. And from what I understand, I believe Fnord feels the same way that I do about this. Fnord, please correct me if I am misrepresenting you. But ASpartofme, I hope that answers your question.

I am also one of the most supportive people of people who cannot afford to or do not choose to get an official diagnosis because that was me a few weeks ago and if I had not been in the right places at the right time and blessed with having the right people dropped into my path who helped me get an accurate diagnosis that I could afford, I would still be in that camp.

AsPartofme, I really appreciate you asking this question and I am so glad you did. Sometimes I have noticed that we on WP, just like everyone can often do IRL, sometimes jump to erroneous conclusions about what someone said, often adding our own words which the person never said. And sometimes these conclusions are emotionally charged because of experiences we have had that affect how we understand things. Then we make judgements and criticisms based on those wrong conclusions and sometimes even stick to our own judgements and reject any attempt the person who originally said the thing tries to make to correct our misunderstanding. And sometimes the person who originally said the thing may not be using the best words to say it either. Sometimes, like in this case, the word being used is correct by dictionary definition but it is not being used in the most common colloquial fashion. So we can't always assume that we really understand correctly what we think the person is saying. And clarification never hurts anyway.

So I really appreciate you asking about this because often times what we base our critiques and judgments on is not at all what the person actually meant. I do this all the time with my husband. And as human beings, especially if we are on the Spectrum, we know we have difficultly with communication a lot of times anyway. So I like to always assume that perhaps I might not always know or understand what the person is actually saying or meaning and try to ask for clarification before I make a judgment. I need to get much better at this skill at home though, It's a whole lot easier to do on a forum.

it does not affect me if people wish to proclaim themselves to be whatever they think they are.

B19 wrote "Autism is not a formal diagnosis. It is a way of being, a way of living, a way of perceiving, a way of experiencing"
Right now I totally agree with this.
I feel a bit like the NLP phrase "the map is not the territory"

I too do not really need external validation to make things better for me, however I do feel some pressure to do so. It feels risky .... If I am told it is something else I have to start again.... yet again!
I really do trust myself and have done the thinking and self-analysis... I have lived it ...more than a doctor could do. by studying it... but at the end of the day it is just a convenient box label for science........ perhaps I should just be happy and stop worrying about it.

Re Aspergers being incurable and misdiagnosis not causing harm:
Self diagnosis is personally helping me so much already I am afraid of compromising or even losing that….. in other words............. If it is not Aspergers what the hell is wrong with me! I`ve been trying to find a reason for 40+years and Aspergers really does fit me perfectly for myriad reasons..... At last an explanation for my personality . It makes me feel alright not all wrong.

Knowing that it is aspergers lets me feel that there is nothing `wrong` with me I am just built differently from some.
My self-diagnosis is good for me.... surely that should be enough reason to accept it .

Can I just put a premise to `officially` diagnosed members....
How would you feel if the doctors suddenly changed one or two criteria for autism/aspergers and you suddenly did not qualify....... Q. would your autism be different?

Surely the help of this label (especially as it is a way of life rather than a curable problem) for many of us is so we can help ourselves & find our own path in the world ....end of story.
The label or diagnosis is for our benefit (and perhaps nearest & dearest); not for the benefit of science or society?
So ultimately I am questioning that the diagnosis per se doesn`t matter.
What does matter is our response to the issues it brings up and helps us focus on, helping to dilute our problems, helping our ability to create strategies to help our social issues, coping with our individual set of traits and appreciating and utilising gifts and talents we possess......... call these things what you will.

If they are in a package called Aspergers or Autism or `quirky personality disorder` with hyper focus a few twitches ,strange little habits and the ability to argue the backside off a cow syndrome`, ................... who cares, so long as it is useful and helps us. Is it not just a tool to make our lives a little better?

OP you make very interesting points there. I second all of them.

And elsewhere, the point about knowing ourselves so that we can improve our lives - yes, that is the point.

Just a little addendum to my last post.
I would like to make it clear that I do understand that for some people an official DX is really useful to get help, resources etc.... more power to your elbow.
P.

I am diagnosed, I am grateful that I am. It gives the opportunity to access the resources I need for school for example benefits and tutors.
It helps me with my behavior issues by allowing me to see psychotherapists who specialize in autism so that they can understand my challenges. My family is more understanding and patient with me and help me when I am at breaking point with sensory overload (which is a huge issue for me).

I get it some people do not want to be diagnosed and that is their lives, their prerogative. But with that said unless they do get a diagnose they will not have the opportunity to access these sort of resources and for the rest of their lives they will have to deal with all the naysayers, it is just how the world works, even with a diagnose you have doubters but without it that list becomes massively overwhelming and that sadly sucks.

The one upmanship thing definitely gets old. I think it is really important for people to respect that whether someone has a formal DX or not, each person has his or her own set of personal circumstances which dictate what situation is best for that person. We can encourage each other either way by sharing our experiences and concerns but whether or not someone gets a DX is dependent on what will work best for him or her and we should respect that. And we only know about people by what they have chosen to share in small posts and have no idea of what their life is really like other than what they have shared so to make harsh judgements or to have a one up or a better than thou attitude is not right.

It should be remembered:

It's not that people DON'T want to get diagnosed--it's that it's prohibitively expensive in most cases (here in the US). Who has $2,000-$3,000 to throw on a diagnosis which won't provide (the adult) with any discernible benefit?

Jerry Seinfeld never actually said he was on the Spectrum--if you read what he said carefully, it seems to me that he was implying that he might be within the Broad Autism Phenotype. At the most, he was implying that he was only on the Spectrum in a "broad" sense.

I don't care if he has one buck or 800 million bucks. I believe what he stated will serve to de-stigmatize autism--at least a little bit. Therefore, his "disclosure" is something which is positive.

I believe, in other places, there is a long waiting list for a free diagnosis--which you might not get because there are psychologists who are reluctant to diagnose autism owing to perceived overdiagnosis.

It seems to be somewhat of a crapshoot in these places, since it depends upon the philosophical orientation of the psychologist, rather than a strict adherence to diagnostic criteria.

re NiceCupOfTea quoting B19"Autism is not a formal diagnosis. It is a way of being, a way of living, a way of perceiving, a way of experiencing.

NiceCupOfTea, Personally I dont give a monkeys if you thought this was "rubbish" .... personally It is good for me.
(`rubbish` is a mite dismissive don`t you think?)

This quote it is fairly spot on for me.

I do see my Aspergers as a way of life...... again i repeat :
" the map (ie. the diagnosis) is not the territory (ie. living with Your autism)

It has coloured everything I do for most of my life .... what else is it other than a "way of life"?

In addition, if I battled against assimilating it into my being I would just end up messed up and depressed again...... I have to make it my way of life coz it sure aint going to go away!

I may be reading you wrong NiceCupOfTea (my genuine apologies if I am) but you seem to be inferring that some of us should just `grow a pair` and deal with all the knock backs and dilemmas and just get on with getting a diagnosis that is if we are really serious about it.
(If I have misinterpreted my apologies in advance.)

B19s point was about embracing the reality not the name/diagnosis per se.
I am pretty sure B19 is not dismissing the importance of official diagnosis for some/many.

At least in Sweden and in America you do not get any support from the government, doctors, resources, etc... without a formal diagnose.
For example I would not be allowed my language tutor without paying a large sum I could not afford but since I have a diagnose I can get the tutor for free.

I also personally experienced many naysayers among friends and family until I was diagnosed and when I shared my diagnose with some people they still said things to me like "You do not have autism!" straight to my face, no hesitation.

So I guess it is different everywhere, where you live and what people are in your life. As far as your emphasis on division, that was not my point. There are those who choose not to get diagnosed and there are those who do. That is reality, that is the facts and that was all I was saying. As I stated before it is entirely a persons prerogative rather or not they choose to get a diagnose and whatever choice they make is fine. If you are talking in general about people it is normal language to use the terms "they or their or them" but I just believe you want to start an argument with me and I am not going to fall into your trap.

Self-diagnosis can be correct, depending on the person and what they do and think to reach the conclusion.
However, I don't recognize self-diagnosis as valid, because it is missing two parts of a three-part process: self-report, outside observation (missing due to lack of seeing selves from outside), and childhood history (missing due to both lack of seeing selves from outside and not enough memory of early childhood).
If only one part is missing, like either self-report (missing if person cna't report) or childhood history (missing if parents can't report), and a diagnosis is made by a qualified professional on observation only, then I recognize as valid, but if the outside observation part is missing, then I can't recognize as valid.
I don't support people saying that they have ASD when they have not been diagnosed.
I support them saying that they have autistic traits and how the traits affect them.
From people around me, I have noticed that it is popular to attribute their traits to autism instead of other disorders.
For eggsample, there are traits that are unclear if they are more ASD traits or ADHD traits.
But people who have them always attribute to ASD and never ADHD.
ASD or autistic traits seem more desirable to have for some reason.

I have experienced this too.

I would assume that this is because ADHD isn't an attractive label, being that there is nothing potentially positive about it. There are arguments that ADHD causes enhanced creativity, but even if it does that isn't something people generally care for. The label itself isn't that appealing, and is now stigmatized due to over-diagnosis.

ASD on the other hand, promises features such as attention to detail, enhanced sensory perception, naivety and general explanations for what would otherwise be seen as the individuals fault, such as poor social skills, rigidity etc.

. Sensitivity is often perceived as desirable and somehow people translate sensory sensitivity to personal sensitivity
. Naivety is often seen as cute and 'not one's responsibility'
. The diagnosis seems to impress a lack of responsibility (social skills etc.)

This often occurs with OCD as well, because people want to be quirky/different, and 'troubled'.


If you actually have a disorder, it is very unlikely that you consciously want it.

_________________
Unapologetically, Norny.
-chronically drunk

Two points here
first Btnnyr
`Valid` can be a general term, a scientific or a statistical term which I think you are trying to use in this instance inferring the value of something is proven in some way.

Personally I do think I am able to accurately self report and to remember my mother saying things to me and peers commenting on certain traits traits or behaviours to report them without bias. (my parents are dead now so are you saying any official diagnosis will be invalid too?)

I can clearly remember things from my childhood and report them without bias ... is this not valid?
Even the most exacting diagnosis is never an exact science. Valid in this sense is a term that once more a comittee of scientists have agreed upon, I garuantee it will be a different vakid in 20 years time.

I know I cannot report how I looked at things or reacted to stimuli when I was 2 or 3 which are supposedly diagnostic. But are you saying that a diagnosis canot be made without this info?
If so then a better more flexible diagnostic model needs to be found.

Secondly norny, I do not choose to see my aspergers as a disorder.

Order and disorder; Normal and abnormal are always relative.
Anyway Evolution works by adaptation who is to say that it is a good or bad adaptation. I imagine an opposable thumb was originally a `disorder` in someways and a boon in others and look how far that has brought us. just as webbed feet became a liability when creatures started walking on land!
(slightly trite argument I am making but I hope you get the picture that supports my point)

apologies for all the typos... brain shutting down now!!

You may find this very interesting, Peejay:

http://abnormaldiversity.blogspot.co.nz ... nosis.html