Why is diagnosis so hard?

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There seems to be a lot of issues with people self diagnosed with AS who have found it difficult if not impossible to get a diagnosis. I am one of them.

My therapist is convinced I am schizoid for instance. Yet I show much interest in socializing demonstrated by the fact I try, I only isolate myself because i am so used to failing it's just easier that way and I certainly take pleasure in things.
Otherwise I am told I am just anxious, just depressed, just, just, just.
Until I started researching I never knew my sensory issues could have anything to do with AS but of course I'm just being deliberately awkward when this happens.

Diabetics don't seem to have this problem.

Why is this happening? What can be done about it?

Guess the real question is why do otherwise intelligent people insist on being so ignorant.

Lots of reasons.

1. AS is a difficult diagnosis to make. It is similar to many other conditions (schizoid or schizotypal personality, social anxiety/phobia, ADHD, avoidant personality disorder, learning disabilities, speech impediments, giftedness), it has a wide range of possible expressions, and it is not always obvious.

2. AS is an invisible disability, and many people have learned to hide their traits.

3. AS is thought to be a childhood disorder. Many professionals who work with adults have very little experience in evaluating or treating people with ASDs.

4. ASDs are neurological, not psychological, and most psychologists focus on psychological disorders (mental illnesses) rather than neurology.

5. ASDs are thought by some to be a "fad diagnosis", and diagnosis of ASDs is avoided except in the most obvious, severe cases. Alternatively, ASDs are assumed to be rare and obvious and thus milder cases are missed.

6. Incorrect stereotypes are prevalent. For example, some professionals believe that you cannot have an ASD and have friends, be sexually active, be employed, live on your own, understand figures of speech, have a theory of mind, be able to drive, have a college degree, be able to tell or understand jokes, have "mainstream" special interests, have a bad memory for numbers, read fiction, or participate in pretend play. None of these stereotypes are anywhere near universally true, and some are completely unfounded.

7. Some doctors are afraid of the word "autism". They worry that if they "label" you with autism, you will come to believe that you are horribly disabled and cannot do anything useful, ever. This, of course, is not true, but some doctors still think that disability is the worst thing ever and you must stay as far away from it as possible and hide it as far as possible, that identifying with a disability is an absolute last resort no matter how helpful it might be.

8. Information about ASDs is still very new, and diagnostic criteria have changed. This means that older patients may have a missed diagnosis, older professionals may have out-of-date information, and a patient's history of misdiagnosis may cloud the issue. Alternatively, the very newest professionals may not even remember a time from before autism was usually recognized in childhood, and may assume that an adult with autistic traits cannot be autistic because if he were, he would have been diagnosed as a child.

You might be at the wrong age--it is much easier to diagnose when young or old--a diagnosis will be much more likely if you have a child that is diagnosed as autistic.

Aspergers' presents differently in women--not as obvious to most NTs.

heh, you'd think I'd remember that issue, being female (ish) myself.

yes.

9. Aspies are stereotypically male. If you're female, it might not be as easy for a professional to recognize your ASD.

My opinion is that psychiatry, and the helping professions, are art forms. The people who are making a living off it can be sorted by the age they went to school and got their degrees. "Asperger's" will slowly disappear from the vocabulary.

elsing - I was recently diagnosed (just last month). My diagnosis was based upon a number of factors including neurological testing.

As a note, prior to my diagnosis, I had investigated/researched a number of possible "conditions" (including: Aspergers, Extreme Introversion, Shyness, Nonverbal Learning Disorder, Social Anxiety, Generalized Anxiety, Avoidant Personality, Schizoid) that could explain by "behaviors".

I would also ask your therapist how much experience he/she has working with people diagnosed with Schizoid. The psychologist I met with indicated that my patterns of behavior were no in no way similar to other people with Schizoid that she previously diagnosed.

Could you elaborate on the neurological testing?

Sethno - Please check out This Post and This Post. I hope this helps explain what I meant. If not, let me know.

Rocket

OP: sometimes the difficulties in getting diagnosed are to do with the available service for it in peoples' country. Or there might be laws but no funding to do it properly if there is a government health service. Sometimes you can see a psychologist or psychiatrist who is not experienced or expert in ASCs and so they don't pick it up or try to attribute it to other conditions. I think when it comes down to it, actually finding a clinician with the right expertise is pretty difficult.

I have personal experience of so-called experts who entirely f***ed up my first assessments and failed to diagnose me (guess what, I'm female ).

As others have pointed out, all the research and diagnostic criteria is based on male presentation. Clinicians are very slowly starting to wake-up to female presentation but for instance, in the new DSM in the USA, they haven't even incorporated the female presentation into the diagnostic criteria - you see what we are up against! In the UK we use the ICD which is pending revision, so I hope they incorporate criteria for picking up females in that when they revise it as it's internationally used.

Actually, my diagnosis was not so difficult to do.

At first both my mother and the shrink thought I had schizophrenia (as a child I showed more symptoms), but then the shrink ruled it out and came to the conclusion I had AS/HFA+ADHD.
I didn't have speech delay therefore I was diagnosed with AS and ADHD.

I've never been able to copy others, I've never tried to fake, and I can't hide the symptoms.

I guess this is why it's not a difficult diagnosis to do in my case.

I find the main reason I can't get formally diagnosed (at least in more than a patronizing "sure-I-will-diagnose-you-if-it's-that-important" way) is because almost nobody seems to understand that Autism is not just a children's issue. I've had to politely point out to the 'expert' that yes when you have no friends, are chronically underemployed and act like a 21 year old because of my Asperger traits then yes, that counts as an impairment. It just doesn't arbitrarily end at adulthood . I will acknowledge that my symptoms have greatly diminished but garbage like "well, everyone gets bullied: it's not a sign of Aspergers" is pure BS.

The only person I know of that is experienced in adult autism and can give the proper diagnosis refuses to diagnose without a full childhood background check including parental interviews and that's not gonna happen at my age. Besides, why would I spend (A LOT) of money I don't have to rule out the obvious (I don't have schizophrenia or any personality disorders for example). At this point, the only question is that I had a speech delay but it was based on hearing difficulties due to allergies so would I be Asperger or HFA? At this point it simply doesn't matter especially with the DSM V.

Ugh. How many times have I heard this one "you look and act like a textbook Aspergers, but you cannot have it because you have a full time job and can live on your own and have a girlfriend. Never mind the fact I was YEARS looking for work to the point where I was told it's impossible for someone with my intelligence to not be working, took until 29 until I could finally cope living alone and until 29 until my first kiss and subsequent intimacy. Nope, once I reach those milestones, I'm suddenly "not AS" because I'm not impaired. I still have zero friends though and even though I'm well liked overall I cannot hold onto friends for more than a week or two no matter what I say or do.

I've heard it said before that I need to get the opinion of a properly trained expert to be sure, but the "experts" I have run into have said some of the most idiotic things I have ever heard. I even had to explain to one how to properly pronounce it. I asked someone I trust who works with Autistic college students about the possibility of be being ASD and they chuckled and told me I was probably the last to figure it out. If it's THAT obvious (and it is) why is it so difficult to find someone who can pick up on it without me having to explain in detail why I meet the diagnostic criteria?

A few more reasons to expand on with this:

It's expensive to diagnose, in UK the cost I'm told is £900 per assessment. I guess I could go private but I don't have the money.

Another reason is the only person it bothers is me, I am not on welfare, I'm not committing crime and as long a I am 'Just' something I'm not costing the NHS anything.

Special thanks to Callista for the detailed explanation; it was helpful, I really needed all these things to be summed up.

A few days ago, I read on an AS-dedicated website that of all the people on the spectrum only those really need to be clinically diagnosed who have severe social adaptation problems. For the guy who wrote it, "not copying in everyday life" was the key diagnostic criterion. The logic behind it is simple: why waste time and money diagnosing some one who doesn't need medical treatment or social assistance?

I have to admit that, in my particular case, I agree with the healthcare bureaucrats. Considering that I have a degree in linguistics, a job, a few friends, a kid and a dog, live independently, am (bi)sexually active, read fiction and understand jokes (the darker a joke, the better ) , WHY WOULD I NEED A PSYCHIATRIST? What's so good about being their patient?
Well, maybe they could teach me some small tricks like making more relaxed eye contact (I've read about the "soft focus", etc.), but I have learnt it myself somehow... Maybe they would say I should accept myself the way I am, and all that pathetic crap, but I do accept myself, I don't need a doctor to learn it.

I think I could be easily diagnosed as I child; I was absolutely locked inside myself misinterpreting everything that came from outside and not able to explain anything to any one. But I really don't think I would have a better life if I was diagnosed then. My AS (or maybe AS-like) quirks gave me some pleasures many "normal" kids didn't have: my interests, obsessive reading, just watching the world, seeing things I could not explain to any one.... Isolation and bullying was not a big price to pay.

Anyway, now, as I generally "cope in everyday life", it's not about being diagnosed; it's more about understanding myself. Asperger's explains 99% of what I could not understand about myself.
I think taking online tests, reading AS literature and being on this forum is enough for that... At least, in the nearest future.

I wonder what other people here think about it... What do you think are the benefits of being diagnosed if it has no practical purpose (if you don't need drugs, disability pension, etc.)?

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RAADS-R = 170
AQ = 39
EQ = 12
BAP = 120 aloof, 121 rigid and 97 pragmatic

For me diagnosis was not hard. I had to wait a while but not too long and there was no putting me off or questioning the possibility. The purpose for me is an explanation of why I am like I am and an understanding of why I act, or react as I do.
As I was diagnosed later in life, I hope it will be helpful to understand any issues related to ageing as the middle of my life was much less stressful than my early life or my life now.

Why not just get a diagnosis for Social Anxiety Disorder or another disorder then? It may not be correct, but it'll probably provide you with the benefits you want. Since there are so many people don't know anything about AS, a diagnosis probably won't do you much good anyways. It'd just be getting your name put on a potential blacklist of Aspies.

It was easy for me.