Self knowledge vs official diagnosis

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I think layperson or professional we're all prone to a touch of subjectivity. It would be intellectually foolhardy to see it as the sole domain of the layperson. This does not mean that subjectivity blocks out any measure of objectivity. The truth is you have no way of knowing whether I'm being at all objective or not. Choosing to base things on a objective=professional,non objective= layperson basis.

Based on my own research I'm fairly certain that there is something to my concern even if trying to pin it down more precisely is more of a grey area. The thing is some things fit the various possibilities and others have me thinking well I don't experience/have that. Of course the fact that no person with ASD/Dyspraxia/NVLD is the same does queer the pitch in that respect.

Past,negative experience also makes me hesitant . About a decade ago I mentioned enough for a care coordinator to arrange an extra appointment to discuss the matter with a pdoc. I have a letter which states she told the pdoc that she had told me dyspraxia was hard to diagnose. I've since found out that what gets described as NVLD in the USA often gets labelled as dsypraxia in the UK.

I was hopeful that a talk with the pdoc would be the pathway to the seeing there was something that needed to be explored/ investigated . Unfortunately it wasn't to be. To put it bluntly the pdoc was an unhelpful,unsupportive idiot. He asked two or three totally irrelevant questions before curtly dismissing the issue. As I already had an abusive reputation for being "awkward, demanding and troublesome" for seeking more help and support I was reluctant to push the matter. Didn't want to get abused and hurt further.

In the last 3-4 years I've made tentative attempts to broach the subject ie dropping words casually into conversations . The response for the most part has been a deafening silence. The one exception was my then nurse practitioner saying things could be explained by schizotypal , but later in the appointment giving me a printout to a local Asperger's charity. There was however no talk of her pushing for an assessment for me.

I do get the impression that perhaps my mentioning these things is seen as my wandering off into the realms of fantasy; a possible sign that I lack a measure of insight. The product of a diseased mind.

It as shown is not as though I haven't tried to broach the subject but if the people who could help are too intransigent/unintelligent to recognise there is something that needs to be investigated what can you do? As people keep saying you need professionals on side or you're on a hiding to nothing re getting such support.

Still dismissive, I see...

Not everyone's insurance will cover the costs. The insurance we had at the time I got diagnosed did not cover the cost for adults. They covered 100% of a diagnosis for children between the ages of 2 and 6 years old, no questions asked but for anyone outside of those age ranges, they paid nothing. You had to pay out of pocket. And not everyone has insurance. I was very lucky because I was able to get a diagnosis through OVR. But to be part of OVR you have to meet their criteria. But they paid for it in full. But not everyone has that option either. So some people have no way to pay for an adult diagnosis.

I don't know if I would go so far as abusive and inflammatory but not everyone is going to develop Munchausen. Fnord, I know about the experience which makes you sensitive to this so I understand why you say this. But many people are capable of researching something intensely without developing a self delusion syndrome about what they are researching. In fact, I would think that most people are capable of researching a condition or disease in great detail without eventually believing they have it. But I do know where you are coming from so I understand why you feel how you feel.

The reason we might put more credence in the diagnostic opinion of a professional (psychologist or psychiatrist) has to do with the concept of scientific consensus.

In psychology, particularly, there are very extensive methods available to validate a test or set of diagnostic criteria. If a question or observation does not reliably result in the same conclusion among experienced professionals, it is omitted. Both psychology and psychiatry are inexact sciences, but the best we have. The fact that their criteria do change over time is not evidence they are snake-oil disciplines. If anything, it reflects the attempt among many, many practitioners to continually improve the field.

Of course, not every professional practitioner is equally knowledge about every specialization, so for this reason, clients need to do their own due diligence in learning what that practitioner's specialized training and experience have been.

I was wondering about this too. Of course, as has been pointed out, there may be quite considerable "biases" that could skew the statistics, such as people who were subsequently found not to have ASD not reporting back to the forum.

I would have thought that there would be all kinds of interesting questions that researchers in ASD could be addressing, along the lines of establishing how reliable something like the AQ test is at predicting whether someone has ASD. For example, what proportion of people who score 45 or above turn out to have ASD when professionally assessed? (And likewise for other scores, and so on.) I have looked at the original Baron-Cohen paper on the AQ test, and the data there are really insufficient to make any reasonable probability estimates. But it would probably not be that hard for researchers to arrive at some reasonably meaningful estimates, if they conducted a lot of assessments and compared against AQ scores.

Another interesting question would be how reliable professional diagnoses of ASD are. For example, if a set of individuals were to be assessed independently by twenty professionals, how much of an agreement or disagreement would there be in the twenty diagnoses that each of the individuals received?

I would LOVE to read data on both of those points. I wonder of compiling such data given the large number of individual licensed professionals is the biggest hurdle.

I suppose I'm a statistical outlier in that I was diagnosed multiple times as a child but never even suspected that I had Asperger's syndrome because my parents did not share the information with me for reasons of their own. It slipped out in conversation.

If you had asked me a couple of months ago if I had autism of any type I would have been taken aback and said no. I have major depressive disorder, ADHD inattentive type, generalized anxiety disorder, OCD, narcolepsy and PTSD (as it turns out, comorbid conditions). I would have told you that I was shy, socially awkward, quirky and generally weird. But Asperger's / ASD? No way. You know what they say about denial being just another river.

The name of the diagnosis changed over the years but I've always had it. As an infant I was an "idiot-savant," speaking entire sentences before I was supposed to be able to talk at all but missing other milestones and physically uncoordinated. Then it was "gifted-disabled." Then it was "twice-exceptional." Then it was Asperger's syndrome. Now it's ASD. (Asperger's flavor?)

I remember the last set of tests I took as a teenager and it was grueling. They asked me to do all of the things I can't do over the course of several hours. One example was a page with photos of several different but similar-looking faces. I was asked to choose which two photos were of the same person. I thought it was a trick question because they all looked exactly the same to me (turns out I'm face blind). I walked out of there not knowing what kind of test that was supposed to be but pretty sure that I had failed.

If you want to be definitively certain that you have Asperger's syndrome / ASD then yes, it's an in-depth process, usually involving more than one doctor. But in my personal opinion that diagnosis probably only makes a difference if you need disability benefits or Medicaid.

Bias goes both ways; I'm an example of that. It's very difficult for humans to be perfectly objective about ourselves because we naturally tend to see what we expect to see. That's why an experienced doctor or team of doctors is so helpful. I would have denied it until I was blue in the face.

Not having an official diagnosis certainly doesn't mean you don't have ASD, although there remains the possibility that it's something else. It doesn't mean your challenges are invalid or that you should feel unwelcome to post.

It matters if you absolutely need that validation, whether for social benefits, accommodation or your own peace of mind. But that's really where an objective third party such as a doctor should help you. And if they aren't helping you, shame on them. Every patient deserves to be taken seriously and helped to understand what's going on with them.

The term that covers this is inter-rater reliability. Google inter-rater reliability autism. One such result is: https://www.ncbi.nlm.nih.gov/pubmed/28528329

For the validity of other measures and methods, Google "psychometrics" and the disorder or test.

Psychologists and psychiatrists actually do measure these things, but the peer-reviewed papers that describe their results are often dry and very technical, so they are seldom excerpted into the lay press. This should not confuse lay readers into thinking the tests or diagnostic criteria were never examined critically, though.

Having previously been self-diagnosed for the better part of two years, and having seen first hand what a struggle it is to get an official diagnosis, I do not condemn or disbelieve anyone who has a self-diagnosis. For me personally though, I can't help but feel that it ought to be a temporary measure, a stop-gap while a person seeks out a professional diagnosis. I only say this because the fundamental requirement for an autism diagnosis is "requiring support" be that minimal, moderate or extensive. If people are so unbothered by their symptoms that they can get through life satisfactorily without any kind of support, either from professionals or from friends and family members, then they don't qualify for a diagnosis (and by "support" I mean, "if you weren't receiving help for this problem, it would put your life/home/finances/family/job in jeopardy). You can tell when a person isn't getting the services they need, because they are struggling significantly in one way or another.

For me, getting diagnosed was the best thing I ever did for myself. It's become increasingly clear to me over the past few years that I need a lot more support at home and in the community than I was receiving, and that I cannot maintain "meaningful employment" without significant interventions. I quit my most recent job two months ago because, despite working with two job coaches, an occupational therapist, my boss and my boss's boss, and essentially using my work friend as a support aid, which included her repeatedly restraining me during monthly meltdowns, I was still struggling so much with doing my work properly, and with my anxiety and depression (spent two stints in in-patient psychiatric wards within a one-month timeframe) that I literally could not perform my job functions adequately any longer, and it was only a matter of time before I got sacked. Since that time, my diagnosis has made it possible for me to apply for SSDI, Medicaid, and in-home and community based supports to help me with cooking, cleaning and getting out of the house. Remaining self-diagnosed would deny me access to all of those services, and I would very likely end up stuck living with my parents again.

All of that is to say that, yes, services do suck in many areas, especially for adults, and yes, getting professionally diagnosed in the US with crappy health care and an inadequate number of experienced doctors is difficult and expensive, and no, I would never accuse a self-diagnosed autistic of "faking it" or "not really being autistic" because I would have resented it if that had happened to me, however, I really do believe that a professional diagnosis has the potential to open doors for people that they can't even conceive of right now.

What she said.

I admit I don't even know what help is available. I'm applying for disability benefits and also Medicaid if I can get it, but had no idea that there were other types of help. I also admit with no small irony that I'd be embarrassed to have cleaning help come in because my house is such a mess. I don't cook for myself either, which has to be terrible for my physical health. My husband says that whenever he comes home from a long business trip the house looks like a bomb went off and I look like the living dead, complete with hollow eyes and clothes hanging off my body. I must be a treat to live with.

To the OP, perhaps if you can finally find a sympathetic doctor who will help you as you deserve, you might discover the same... that there is help out there that you never even imagined existing. I don't pretend to know what help exists in the UK but would be willing to bet that the support network is more robust than it is in the US.

Is there a patient advocate or friend who can help you with this? It sounds like you might need someone to fight on your behalf.

I get along pretty well without support. It helps that I have a high paying engineering in my special interest. And, I socialize well enough to have co-workers take me to the doctor when necessary. Like getting a colonoscopy. But, the general consensus is that you can't actually outgrow Aspergers.

I have help from a care agency for cleaning and shopping . They'd also help me with socialising if I was that interested in socialising. My stepdaughter helps me a lot with practical stuff.

I asked about my functioning level a few weeks ago. The depot nurse said it was medium high/high medium with the support I'm now getting , but was much lower when I was living at my old address without that support.

The support is to allow me to continue living independently in my own home.

Right now it just doesn't make sense for me to go through all the trouble of getting an official diagnosis and making time for appointments inbetween work just to be told something I already know. Wouldn't really bring any benefits.

I do wonder with my age (61) and it being extremely unlikely I'll ever work coupled with the fact that a lot of water has passed under the bridge/ support is limited whether there would be much point to a diagnosis. I guess I'd feel differently if I was 25-30 years younger.

In the States social workers can answer the question of whether or not a diagnoses would get you additional services or benefits.

Older adults are less inclined to put in the time needed to recover fully from a catastrophic event like a stroke. It takes an enormous amount of time and effort to learn to walk again. Or fix speech issues. But, therapists love to work with anyone willing to put in the extra effort and practice that really makes a difference in recovery. It puts a smile on their face to see someone get better. Then it is more than just a job.

I've been working on my typing dyslexia over the past six months.