How important is formal diagnosis?

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I have recently come to the conclusion that I have an ASD, likely Asperger's. I scored a 39 on the Baron-Cohen AQ test. Everything I've read about Asperger's fits me. I have a steady job with very minimal social interaction (what little interaction there is seems like too much most days). My job allows me to satisfy my interest in technology. Haven't had anything close to a serious relationship in more than 10 years. Need lots of alone time; relate best to my dog. High IQ--top 1% at worst. I have several major interests which I cycle through. Rely on arcane facts to keep conversations going. Favorite toys as a kid: keys, office supplies, rocks, and, of course, lego.

At this point, my feelings are quite jumbled. On one hand, I feel a certain amount of relief. I can finally stop hating myself for being so socially ret*d (I know that term is probably offensive, but it is the best way I can describe myself). There is a lot of work there to do, though. I also feel somewhat hopeful. Now that I have a possible cause, it should be easier to develop coping strategies for the things that trouble me. Maybe I can finally get the things I want out of life.

On the other hand, I feel a fair amount of rage. All the times I've been bullied, criticized and laughed at seem all the more unfair. Needless to say, I don't handle anger very well. I'm not a violent person by any means. Anger just gets internalized. I also don't want to wear the "disabled" label. And I worry what I must look like to NTs--how different do I appear? I wonder how many people around me have noticed my autistic traits.

I'm looking for a little advice on what my next step should be. Is a formal diagnosis necessary? The thought of talking with a professional makes my skin crawl, for some reason. What are the benefits of of a formal diagnosis?

I got diagnosed* so that college, uni and any future employers would have a little understanding of my difficulties (sensory overload, social, organisation, routine etc.). Also I can't be discriminated against in any setting (particularly professional) on the basis of my symptoms- because I have a disability.

On a personal level it's given me an explanation as to why 'I am', I don't understand why some people can leave it self-diagnosed- I just hate 'half-ways!' xD Each to their own though.

On a social level people know what to expect of me- rather than having to explain my symptoms and 'I might be like this because I might have this or that etc.', I can just say straight off that I have an ASD. It's usually enough of an explanation for people as to why I'm like I am and I tend to get more tolerance because of it- i.e. I'm not being unfriendly/rude/dismissive, I just have no idea how to socialise, and I'm not upset/annoyed/asleep because I'm a bad person- it's likely because I've had a hard day of sensory overload and I'm exhausted (sometimes on really bad days I fall asleep at about 4pm- as soon as I get home).

*autistic because I was cognitively delayed- but I don't think as an adult there is much difference between HFA and Aspergers.

I suppose a diagnosis is only as beneficial as much as it can potentially change your current circumstances, be they personal or professional, in a positive way.

I self diagnosed three or four years ago - didn't really realise there was any difference between that and diagnosis until recently.

I've talked with psychologists, general practitioners, counsellors about it, and they didn't - I imagine - realise either.

Then I talked with a guy recently who's pursuing a doctorate, researching aspergers and work experience. He can't use me in his research because I'm not registered with the local autism authority. WTF? I've been a reject and an outsider for half a century and I'm still on the outside?

The wierd part is that the local autism authority doesn't know how to treat adult aspies either - their job is getting help for kids in need of it. If an adult calls them, they automatically assume they're talking to a normal.

even on this site you can be discriminated against if your not formally diagnosed, i left a long time ago as i got fed up with some of the minority on here thinking they had superior knowlege and or intelligence just because they were lucky enough to be diagnosed.. my sons psyc agrees that she feels im on the autistic spectrum and i now have date for my own assesment.. i do feel formal diagnosis seems to be for other peoples benefit, i am sort of hoping im not as as i sort of like just being different now.. although it will be a releif for someone to at least say im not schitzophrenic

In my opinion we are probably the last people who can accurately self-diganose ourselves since by nature we're somewhat mentally tricky and intellectually smooth.
Somebody famous once said that 'self-diagnoses' is just 'wishful thinking by another name'.

Here's a blurb from some web sources for a reference:

Self-diagnosis is the process of diagnosing, or identifying, medical conditions in oneself. It may be assisted by medical dictionaries, books, resources on the Internet, past personal experiences, or recognizing symptoms or medical signs of a condition that a family member previously had.
Self-diagnosis is prone to error and may be potentially dangerous if inappropriate decisions are made on the basis of a misdiagnosis.[1] Because of the risks, self-diagnosis is officially discouraged by governments,[1] physicians, and patient care organizations. Even physicians are discouraged from engaging in self-diagnosis,[2] because doctors too make mistakes in diagnosing themselves.[3] If the self-diagnosis is wrong, then the misdiagnosis can result in improper health care, including wrong treatments and lack of care for serious conditions.[4]
However, self-diagnosis may be appropriate under certain circumstances.[5][6] All over-the-counter (non-prescription) medications are offered on the assumption that people are capable of self-diagnosis.[5] Some conditions are more likely to be self-diagnosed, especially simple conditions such as headlice and skin abrasions or familiar conditions such as menstrual cramps, headache or the common cold.
Complex conditions for which medications are heavily advertised, including conditions like ADHD in adults,[7] present a more challenging situation. Direct-to-consumer marketing of medications is widely criticized for promoting inappropriate self-diagnosis.[8][9] Other conditions that are commonly self-diagnosed include celiac disease.[10]

I personally like the part where doctors aren't supposed to self-diagnose themselves since this situation is most like us since we know ourselves very well, probably to well to be trusted and then the old 'wishful thinking' deal comes into play.

I think having a formal dx is quite valuable. Without one, people insist that your problems are merely a matter of willpower, character or failure to submit to the stautus quo. If you tell them you have AS, they tend to ridicule the idea or to doubt it without a professional opinion. Also, you have the security of knowing you aren't making excuses for yourself or imagining things and that you don't have a completely different diagnosis.

When I was a child Aspergers hadn't been invented. I was certainly a weird kid seeing a shrink at the age of seven back in the 1950's. What was his diagnosis? I don't know.

A few years ago I read about Aspergers.
I thought "OMG, that sounds like my father..... and my son...... and err... me"

Do I trust the diagnosis of a doctor? I wouldn't trust most doctors to examine my dog.

How about the doctors who gave my bipolar wife LSD? Or who suggested that she might benefit from a lobotomy?

I really don't trust most doctors.

These are all very valid points--I appreciate your input.

I'm still undecided as to what to do, though. If I thought a diagnosis would help outside of explaining my difficulties, I would be more inclined to seek one out. But what I'm hearing is that treatment for adults doesn't work. (And no--I'm not really wanting to be "cured" so to speak. I just want not to draw attention to myself, if that makes sense.)

Any thoughts?

I'm skeptical around most doctors myself. When I was a kid they basically told my mum that her bad parenting has caused me emotional problems and that was why I wasn't speaking, aloof etc. Bit backwards really.

I'm going to receive occupational therapy and sensory integration therapy soon. I'll give anything a try because my sensory issues are really disabling. I can't leave the house at this time of year because everything is just too loud- what with all these shoppers.

Where I come from a diagnosis affords me some protection via the disability discrimination act, equal oppurtunities policies etc. I don't know about USA laws though, obviously. xD

I could tell you about all the typical advantages of getting formally diagnosed that you have heard already. So I will give an advantage a formal diagnosis of Asperger's has given me. Before I was formally diagnosed, I hesitated to tell people I had it, because personally I was diagnosing myself---and I was no doctor. So I underwent the process officially and was no doubt and Aspie. I now had a formal diagnosis. Now it's like a new window has opened up. I do not hesitate to tell people I have Asperger's. I take pride in telling them I have it. I think it is that after 44 years on this earth, I finally have a better understanding of who I am. I have pretended to be normal for too long (whatever normal is). The formal diagnosis has given me the backbone to tell people about my type of autism---I do not keep it a secret. I have even told some of my high students I have it (I teach the gifted).

It's not the be-all end-all, but yes, it is important. I think, as certain websites have sniped at, that there are a number of individuals who have social problems and are looking for a label to justify it. While social dysfunction is a key characteristic of Asperger's, there is so much else that is a part of it. When these individuals try to lay claim to the label, they dilute it and make it harder than it already is to create proper support networks.

Diagnosticians are responsible too, missing it in some, and misdiagnosing it in others. I would say the latter is becoming increasingly prevalent, unfortunately.

That doesn't mean self-diagnosis is wrong all the time, just that caution should be exercised and other options looked at and researched. And anyways, why wouldn't you seek a diagnosis if you suspect you have it? I can understand the impossibility due to financial constraints, but I really don't see any other excuse as quite cutting it.

Disclaimer: I was a PCP for ten years, until stress and chronic fatigue got the best of me. I've been on hiatus for almost two years and I don't foresee myself returning to practice. I offer you this as a personal opinion, not medical advice.

Self-diagnosis can be tricky, but some things are easier to assess than others. AS, I would argue, is fairly straightforward to assess most of the time, and not that difficult to self-assess, either. The childhood expression of AS is frequently not especially subtle, and that ASQ that is attributed to Simon Baron-Cohen is not really a bad start, either.

AS is not such a glamorous thing, so people not having but wanting to identify with it seems like a minimal risk. As an AS person, I have never really considered it to be something that causes me or others to be more prone to errors in self-assessment than a neurotypical person. Aside from the social difficulties it has caused me, I've seldom experienced being AS as a problem. Granted, the same may not be true for others.

I would take anyone's assessment with a grain of salt. There are medical personnel who are considerably less informed about AS than are many participants on WP. There is a popular myth of physicians and medical types generally being omniscient and god-like. I assure you, this is not the case, regardless of anyone's position to the contrary.

I guess what I would like to say is that people who are ordinarily quite competent and exhibit good judgment tend to abdicate responsibility for self-knowledge when it comes to things medical. Perhaps they shouldn't.

I recently realized I most likely have AS and want to get formally diagnosed after the holidays. The reasons:
1) I am currently in the grey area between self-diagnosis and formal diagnosis and I can not STAND grey areas.
2) A formal diagnosis helps with any future disability claims and such.
3) Without being 100% sure I feel like an intruder in AS space (but want to be there for support) .... then to make matters worse some places insist on a heirarchy between self-diagnosed peeps and formally diagnosed ones.

I tried explaining these reasons to a non-AS friend who wondered why I just could not say I was eccentric and leave it at that. I suppose us both being Reiki Masters (which makes us distrustfull of people needing letters after their name to do healing) did not exactly help either.

Here are some reasons why I´m most likely not going to be getting a diagnosis anytime soon:

1) Can´t afford it!
2) I live in a foreign country, and am worried about communication problems
3) I don´t trust doctors...(I have a history of medical misdiagnoses)

I e-mailed the National Autistic Society of London, asking them questions and looking for information about a diagnosis. Unfortunately, they told me it´s not possible for me to be diagnosed there due to the fact that I am a foreigner, and I need to be referred by a general practitioner. Instead, they sent me a copy of the AQ test. They explained that it was a screening test and that adults who suspected themselves to be on the spectrum and who scored in the proper range could either go for a formal diagnosis, or- many adults, they said- choose to leave it at that and self diagnose. Since an autistic society actually told me this, I assumed that my self diagnosis was valid. It´s only since I´ve joined Wrong Planet that I´ve found that some people (though not all, thankfully) seem to be somewhat distressed by people who self diagnose. So...don´t know anymore, I guess.

If you are an adult who has managed to cope pretty well in your life, then I´m not sure a formal diagnosis is necessary...unless you strongly feel it IS important. In my case, the most important thing has been that I am aware of it internally. I have done a lot of reading about AS, and it has helped me immensely to understand myself and the world. Otherwise- if I were to be able to get a diagnosis- I don´t think anything would change much.

By the way, I DO believe in self diagnoses. You know yourself and your symptoms better than anyone. About 5 years ago, I diagnosed myself for celiac disease....after going from doctor to doctor and having them tell me that my stomach problems (and emaciation!) were "psychological". Thank God I was able to get the information, and go on that gluten free diet...cured myself totally...and, if I had listened to doctors, I´d probably be dead by now...(yes, it was that bad!)

I'm similarly motivated. I've undertaken an experiment with neurofeedback recently, and - in the domain of not drawing attention to myself - the anecdotal feedback is that it has made a difference. There's some hard evidence that it's made a difference too, but the relationships between the two are still under investigation. There's a diary (long, and somewhat boring and repetitive) of the process here.

And, in my case, the formal diagnosis I'm working through at present to confirm a self-diagnosis of a few years standing is as much for self respect as for anything else. It's my opinion that adult unknowing aspies are often on the receiving end of a pretty raw deal from life, and I haven't found a lot about learning about it that improves things. The well isn't dry yet, though.