Aspies For Freedom

I tend to distrust "professionals" because of all of the artificial mind games they like to play.

I have enough problems in the social arena already, without having to play these stupid games.  Thing is, sometimes I recognize them, sometimes I don't.  *Thats* the problem I've got.

I can handle the normal, everyday people kind of mind games most of the time, but when it's artificial it really upsets me.  I guess that's the professionals arena.  

To define "mind games"  -- normal people kind of mind games are the small manipulative lies, that kind of thing.  Similar to troll like behavior for the forum savvy.

Professional mind games are in a different category.  They are more difficult for me to explain, because I don't understand them   Parroting my words back to me in a different context, sometimes twisting them.  Other things that happen that I just simply can't tell if they were real or set up just to observe my reaction.  ??? I hate that feeling.  

Perhaps I've just not seen a good "professional".  Or maybe they were not trained or able to deal with the way autistic people work.  

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When I say professionals, I refer to the Psychologist with a PhD I was seeing quite recently, the Councilor (with that annoying string of letters after the name that I can't remember) that I was forced into seeing after the parents divorced (whom I believe actually dx'd me as Autistic, but parents didn't tell me for fear of the stigma; I was about 12) and the very bad High School Councilors I was, again, forced to see.  This was before Aspergers was official, I graduated in 93.

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When I went to the most recent Psychologist, I was sort of expecting some kind of structure.  There was none.  I figured I'd say "well, I've finally discovered I'm an Aspie" and he'd have a general idea of what sorts of problems one would have and work on defining my own personal manifestation of Aspergers, and how to deal with the sometimes crippling social anxiety.  I didn't get much of any of that, he seemed to be trying to get me to get mad or something.  

Thanks for reminding me I am supposed to make an apt.

Just to return to EvilZakkie's point here... For me there's another reason. I'm aware that the public healthcare system will provide me with very little that helps, and I'm not in need of welfare benefits or services; so it's not the services issue for me.

My self-diagnosis has come at the age of 60. I'm in the queue for a professional diagnosis because I feel a real need for a third-party to say: "Yes, the experience that this man lives with really IS different. He does have difficulty living a 'normal' life, and this has a material basis in cognitive faculties, emotional processes and the organisation of the mind. He doesn't willfully choose to be difficult, foolish or unkind - his mind simply doesn't do some of the most ordinary human stuff with regard to motivations, norms, expectations of outcome, projections of courses of action and such."

I've lived a 'successful' life - a secure and loving marriage for 35 years, a senior position in academic research, a loving father, a home-owner. Except that at 60 I retired from professional life after four breakdowns too many, and left my marriage because the strain of being unable to meet my wife's deepest expectations of her partner finally became too much for me to bear. I have another life to build now. And I want to have a resource that helps me say: "This man does have a hard life in the 'ordinary' world, and he's done so well precisely because his brain has done an amazing job for 60 years, simulating ordinary capabilities. Now accept something different from him, a different way of living, that meets his different needs as a living, loving, successful person".

I don't expect that my professional diagnoser will have an easy time giving me the AS tag. I'm 'too successful'. But it's worth the attempt. Maybe I'll meet a capable one?

Ah, EAC, a superb statement...you, at least, seem to understand. (you know, these Farkers are not all as bad as i have been lead to believe...)

um. i dont think i can make a better rebuttal then that. I'm actually lost for words, a true rarity!

Josh,
Here's a blog I wrote last year about my journey through the "mental health system" in the good ol' USA.  Prior to the therapy mentioned in the blog excerpt, I was in therapy, on and off, since the age of 7. I also attempted suicide three times. The big problem my parents complained about was my depression, being a brat, crying fits, and having issues with them and my friends.  I now know that all are typical experiences of folks on the autism spectrum.
So, here's the excerpt:
I haven’t blogged in awhile because I’ve had to put some things into perspective, and to get used to something new to me—high-functioning autism, or Asperger’s syndrome.  Last year I was diagnosed with OCD.  I started therapy for it, but eventually I realized there was something missing—a piece of the puzzle that we had not yet identified.  About that time I picked up a book by Temple Granden, the famous animal scientist who is also autistic.  Over the next year, I read her book (a long time for a book, I know) and began to see myself in those pages.  Each page seemed to leap out at me—a three-dimensional description of who I really was.  Not liking to be touched.  A fascination with words, sentence structure, and puns. Being hopelessly locked into routines that made little sense to others.  A lack of genuine connection with people and a simultaneous belonging with animals.  Enjoying repetitive activities like rocking and watching the same TV show over and over again.  Social anxiety.  Dressing weird as a young person, and inappropriately for someone my current age.  Not liking to talk for too long.  Difficulty remembering names and faces.  A fascination with twirling objects, like fans. And finally, a pattern of making hasty decisions without any real regard to consequences.  

I was seeing a therapist for my supposed OCD—but I found that I did not really struggle with the things I should have been struggling with, such as fearing impending doom if I did not stick to my routine.  Rather, I became irritable and anxious if I could not follow my rules—something more characteristic of a person with autism.  My therapist accused me of trying to be different; she pointed out that I dressed strangely and liked off beat things simply because I didn’t want to join the status quo.  I thought about that, and concluded that while that may have been the case for a couple of years during adolescence (although I can’t be sure), at 29 years that was unlikely.  I simply was different, but I did not know why.  

And then I sort of started to spin out of control emotionally.  I felt more alienated than ever before—I felt as if I was collapsing inward.  I started to think about suicide again, despite being on two heavy anti-depressants.  Then I came across a little tidbit on the Internet that changed everything.  I read that often people with high-functioning autism (or Asperger’s syndrome) are mistakenly diagnosed as having OCD.  With a diagnosis of OCD, treatment is of course totally focused on that one area—repetitive thoughts and behaviors—and autism is not generally considered after that.  So I asked my therapist.  She laughed outright and said, “you’re not autistic”.  But why not?  Because I could talk?  Because my vocabulary may be unusual?  But talking, and talking well at that, is quite normal for people with Asperger’s.  

So I decided to see someone else—someone who would take me seriously, whether or not I was autistic.  And that’s what led me to this current place.  My new therapist sent me to be evaluated by an autism specialist—and you know what?  We really do know ourselves best.  I wasn’t simply seeing what I wanted to see in the pages of Temple’s book.  I had spent years considering myself, compulsively thinking and rethinking about who I am.  And I was right.

Josh, I didn't self-diagnose, but I already "knew" by the time I found someone who would take me serious enough to evaluate me.

Josh -
Since I see that you have checked in recently, I have decided to post in the event you come back.  Everyone here has made good points, and I think they have given you some good advice.  I only have a couple of things to add.

Many of us (as I am sure you can tell by reading the posts) have been through the mental health system for years.  I’ve noticed that many clinicians are so eager to give their own diagnosis, they fail to look at previous diagnoses and attempt to decipher how they might have come to that conclusion in the first place.  Different times of life can create issues that affect us in a whole new dysfunctional way.  I, personally, have been misdiagnosed with at least 7 mental disorders (none of which I actually had) before being diagnosed with HFA.  I can see how they connected the dots each time, but it might have been helpful if any one of the doctors had gone back and actually taken a look at the diversity of diagnoses, and tried to figure out the important pieces before trying to label me with something new.  Looking back at each diagnosis, I did indeed meet some of the criteria, but there was a bit of straw grasping on some points to actually commit to a diagnosis.

Secondly, take the medications a person is on into account, before getting too carried away with diagnosis.  Yes, this might be considered “common sense”, however, there are people who have actually been misdiagnosed with a mental disorder based on the effects of medication.  For example, if a 100 lb. person is on 300 mg of Amitriptyline, expect them to have a flat affect . . . it may have no relation to schizophrenia.  You can also expect them to be sleeping a good portion of their life away, and this has nothing to do with depression.

One last thing.  Don’t read too much into the diagnosis of other family members.  My mother was diagnosed as a “schizophrenic”, but if you look at her records there is nothing to support this diagnosis.  Take into consideration the lack of information up to the present point in time, and also the area of the country/world you are getting this information from.  Where I live, Autism wasn’t identified unless you were completely unresponsive, and didn’t speak at all.  Things are changing, but very slowly.  They were quick to diagnose me as schizophrenic when I was younger and this was partially due to my mother’s (probably inaccurate) diagnosis, and partially because I was over medicated (hence the medication warning).  My son’s diagnosis of Autism should have been easy, but I think they were thrown off course by all the so-called familial schizophrenia issues, that they couldn’t see what was going on until much later.

Good luck with your career.

Yep--that's how I felt too.  
Oh, and Janet...thanks for your kind words! =)

Quite so.  In my case I had 43 years of 'evidence' before knowing for definite, and 43 years of solid evidence is quite a lot.  I also met every one of the stricter-than-DSM IV criteria according to the best of the online tests (Cambridge AAA etc).  I didn't need therapy or benefits.  I wasn't 'eligible' for state diagnosis, and even if I were, there are huge waiting lists and almost no-one in the country qualified to diagnose adults, so my options were to travel a couple of hours for a private diagnosis at a HUGE financial cost, or don't bother.  That's not much of a service for the 500,000 in the UK. It's why I'm pressing for a simpler assessment procedure based on the Cambridge AAA model for those who would like to 'know' rather than those who want to have medical/employment benefits or adaptations.

Sort of, but it's the diagnostic computer program the professionals at the Cambridge centre use to help fully assess someone.  The link is here:  http://www.autismresearchcentre.com/tests/default.asp  and the AAA test is at the top.  It does require other test results to be put into it, and an assessment, but it gives a result that is stricter than the DSM IV process, he says.  It uses Microsoft Excel and contains some fairly large macros, so not all computers will run it.  Tony Attwood recommended use of it by professionals too.

Do you mean on the front page where the other questions are?  I think the professionals only put something in the box they want (either yes OR no, not both), but not entirely sure.  It is a very confusing test set for non-professionals I think - it needs a lot of cleaning up and explaining and data-protecting if it were to be used by a wider selection of trained people for assessment (rather than diagnostic) means, I guess.  But it's still the best I've seen in terms of what it asks the professionals to consider.

"...Additionally, I believe the results obtained by individuals that self-administer this test are questionable if not useless..."

Josh, are you able to explain why you think Simon Baron-Cohen's test would be potentially useless, or are you of the same opinion for any online test?

The trouble is, there's different goals for clinicians and the aspie population. Clinicians get paid for diagnosing people, as much as £900 a test i done privately, as I understand it.  Understandably, with legalities and insurance being what they are, the only advice you would be able to give is "only clinicians can diagnose".  But, are there statistics that show whether robust online testing is any more or less reliable than clinical testing?  In the country at the moment there is (to quote Tony Attwood) a desperate shortage of people able to diagnose adults.  What do those adults do?  Wait perhaps several years in a queue to find someone to diagnose them, or at least find out as an "educated estimate" and find ways to progress with their lives in the meantime?

Thinking more about the whole issue of whether a self-assessment can be of value, I think it is clear there are plenty of things for which it cannot be any value at all, e.g. getting government benefits, getting expensive adjustments at work, etc.
But in what ways could believing you're aspie be a bad thing?  And who would wish to do so?  It's not a popular thing to have, it's not cute, it doesn't entitle you to anything, there's no cure, there's no tablets, people won't say "gosh, how can I help you" (mostly because almost 100% of the population is entirely clueless about what helps aspies anyway).  The only thing it helps is the person themselves, and maybe those around them, giving them a way to identify ways to avoid stresses and ways to find the most productive things for them.  It may or may not lead them to seek a formal diagnosis, which is pretty clear can only be done by a qualified experienced professional.

Rather than thinking "hey, my husband/wife/partner is a thoughtless self-absorbed so-and-so", it enables wives/partners/husbands to think "there could be a reason for this - perhaps I don't have to be down the divorce courts after all, if we can figure this out".  It can help.  I appreciate doctors may not like people trying to help themselves, but it really can help people to find out they may be aspie.  There are simply thousands of people here, on WP, elsewhere, I've read about who have (they write) been pleasantly surprised to find a possible answer (not a definitive medical answer - a possible answer).  

It was a heck of a relief for me, and it turned out I was right, too.  My life has been so very many years of evidence of aspie behaviour from the earliest of ages.  I had to learn about people by reading the Desmond Morris book on human behaviour.  Until then, I had not the slightest idea why people behaved as they did.   Aspies are not given to 'flights of fancy' - we tend to be highly logical, highly methodical, thus I'd say a study would be likely to find that we're actually very good at spotting what we are like, and what we're not like.  I guess there's a chance that someone would think they were aspie and miss out on some other diagnosis and a chance of a cure of something else, but I have lost track of how many people have said they'd already had wrong diagnoses by other doctors/psychologists who had never realised what adult aspies are like.  So...until we get better quality, more widely available, more timely diagnostic facilities, with testing being done by really expert assessors, the better online tests are a pretty good first indicator.  

How best to explain...

Let's make it clear that I'm talking here about high-functioning autism/Asperger's Syndrome, not about low-functioning autism.

Suppose you have two different types of computer - and let's take a real example of an Apple and a Microsoft Windows-based PC.  They are both computers, but just try getting them to talk to each other.  They are 'wired differently' - built around different software and components that means that it is very difficult getting each of them to talk fluently to the other.  Supposing the vast majority of them are Apples, excellent for marketing, art, social communication, and only 1 in 100 are Microsoft Windows-based, excellent for science, maths, straight-line processing?

Which one is broken?

Neither.

They work, but in different ways. The wiring is different.

Thus, we have 'neurotypicals' and aspies.  Both work.  We work differently.  We (Aspies) don't always cope, not because we're faulty, but because society expects us to work like everyone else.  We end up stressed, overloaded, fused, in need of a reboot.  Ideally society would make itself aspie-friendly, but it doesn't.  So we end up doing all the coping, all the enduring, and we get exhausted and need some ideas how best to get through it all.  That's where a lot of us end up seeing a diagnostic expert, not because we're born broken and in need of fixing, but because we're being plugged into the 'wrong connections' and the 'wrong software' all the time and it doesn't do us a lot of good.  We are hoping that the label will mean that other people stop trying to plug us into the wrong connections all the time.

Put a load of aspies in a room together, and we work just fine.  In fact, I'd say we're more logical and easier to get along with than most NT folk are.

Does that help?

Yes, I do agree with you.  I should have made it much clearer that this was just an example rather than it exactly fitting the aspie/NT differences.

Well, I'm sure Josh has gone on to another module in his education by now, but this is the first time I've seen this thread. So, I figured I'd get this off my chest.

Josh, one reason so many people begin by self-diagnosing themselves with Aspergers is that autism/Aspergers is a moving diagnosis. Established professionals are often working with educations that are years out of date - sometimes decades. Even young doctors are taught old information by old doctors from old books, and are usually disinclined toward continuing education on the topic - especially when the continuing education hasn't many answers either. So, it’s extremely rare to find someone who is truly up-to-date with what it actually looks like inside an aspie’s head, and can tell a “normal” person from and aspie who’s worked hard for decades to pass as a normal person and really just wants permission to stop pretending.

Other apsies can often see each other more clearly that even well-trained NTs can.

The point is that the online community tends to have more current and more in-depth - albeit more anecdotal - information than the vast majority of practitioners. Sure, it would be great if we could have available all that current, deep, freely given information AND the mind of a rigorously trained scientific counselor, but we seldom do. We often have to choose. A poorly educated but highly-skilled professional? Or the task of sorting through a huge mass of personal, biased, often-misguided, potentially damaging material that eventually yields a tiny bit of up-to-date, practical, useful information that raises my quality of life?

So, I'm sure the autistic community would be far more willing to tell new folks to go straight to their professional diagnostician, if they had the confidence that there were more than a handful who were able to do more than simply look in the DSM and try to look for attributes that contradict the checklist.

I admit that I was very careful not to share my suspicions when I went to ask for a diagnosis. I didn't want to suggest anything because I was very afraid the doctor would simply react to my being "uppity" and automatically tell me I couldn't have Aspergers. I know SO MANY doctors who feel threatened when civilians trespass on the Sacred Ground.

But there’s another, larger question that comes from all this. Although it’s clear you have been trained to believe in a cure (I’ve noticed and appreciate how well you’ve hidden your condescension) I hope you aren’t misled by the phrase “self-diagnosed” that we throw around here so freely. Actually, for many of us, it isn’t so much a medical diagnosis – since it isn’t an illness – but more of a cultural awakening. Like a person who finally understands that they are gay, or someone who suddenly discovers their Native American heritage, and it is really up to those already in the culture to welcome us in and acknowledge our right to be here.

If we were willy-nilly diagnosing or un-diagnosing cancer victims, I would be right there with you. There is well-founded, verifiable science behind that diagnosis, and the majority of doctors can do it with their eyes closed. And the result of waiting for group acknowledgement of that self-diagnosis can be death. Most significantly there are remedies that may very well save the patient. They can actually be made into FORMER-cancer vistims

We do not have that possibility. We are as God made us, and should simply get on to the job of learning to live our lives as well as we can. Some of us need to touch our culture in order to do that. And our cultural gatekeepers are certainly more likely to be other autistics than to be doctors.

Learn to treat our anxiety and depression. Give us the tools to speak more clearly. Help us to learn to deal with the expectations of those around us. And teach us to be brave enough to create our own grand expectations.

That’s what we really need you to do.

Gitchel, that is a such a wonderful post.  Thank you.