I feel wronged by a psych tester who didn't see my AS

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This is making me think twice about seeking a diagnosis. Yes I am curious, but what good would it do? And it sounds like it could do a great deal of harm. Especially since I have more or less become accepted as "normal" by people who think they know what Aspergers is. It is not a label I choose to have or really want, but I know what I know about me, and I know damn well I did not by any stretch of the imagination have a normal childhood. They do not put normal children in special education, they do not put normal children on psychoactive drugs or give them behavior modification, they do not threaten normal children with the state hospital, and in case I ever had any doubts whatsoever, my peers on the playground had no problems making it very very very clear that I was not one of them, that I was the weird one to be shunned. So I find it ironic now that I have "made it" and my Aspy credentials questioned! I do know that when I first started reading accounts of life with autism and Aspergers, it was like a light going on in my brain. Here were people who thought and perceived life as I do! I am NOT alone. And that is what Wrong Planet has given me, the knowledge that I am NOT alone and I don't have to struggle blindly anymore.
I do not need some stranger with a fancy degree to tell me who and what I am, any more than someone who is gay needs to have it officially validated.

I am currently searching for a diagnosis as Anathemaviolet is.

For me it is about reaching a conclusion, getting an answer that is conclusive so I can work from that. I am the same (in a way) as her in that I would also like to obtain a diagnosis for study and career reasons because I am moving quite well in my role at work and it would help management to know my strengths and weaknesses so that I can fulfill my role as best as I can. E.G. Putting me in a position where my role is to communicate with staff, and socialise with staff on a professional level to understand them would be quite uncomfortable for me, whereas doing reporting, problem solving, analysing situations and developing new processes is a role I thrive in.

Mostly it is about reaching a conclusion outside of myself. Just like some people who may think they are going crazy will sell their soul for just one person to agree with them and say "you're not crazy".

I'm willing to accept other outcomes aside from Asperger Syndrome, however it has to apply to me and be universal. I've been seeing a Psychologist who thinks most of my problems originate from a Depersonalisation Disorder, but that doesn't explain my interests, my social impairment and aloofness. It only describes my detachment from my emotions or compartmentalisation of sensory and emotional input, and that symptom can be explained by AS as lacking the ability to empathise with other people and recognise my emotion. My psychologist tells me "You need to stop overthinking things", but that is the problem, I can't, that's what I'm seeing him for and why i'm looking for an answer.

A diagnosis is like an acceptance by society for me, and a confirmation that i'm not just self-diagnosing and making things up in my head, that what I'm experiencing isn't the norm, that i'm not "fine" and I guess I just want that clarification that someone experienced, a professional will finally agree with me and go "I understand, you're not fine" and then reach a diagnostic conclusion.

Whilst I don't think we should blindly trust professionals, that stranger with a fancy degree has been studying the human mind for a lot longer than you have, to the point where they have been recognised as being able to diagnose, and assist people with their mental problems. Without these Strangers with Fancy Degrees, Asperger Syndrome would never have been found or quantified and Wrong Planet would not exist. You are who you are, as you said. But the label of Asperger Syndrome is to summarise your deficits in a medical (psychological) sense.

The problem with not getting a Diagnosis (my opinion in regards to myself and AS) is that you don't know you have Aseprger Syndrome, you think you do based on what you have read and seen. E.g. I can't say I have Asperger Syndrome, I can only say I think I have Asperger Syndrome and I'm currently pursuing a diagnosis and am seeing a psychologist.

There's more to a diagnosis than just accommodation or a way to get disability. I joke that I can never be fired - I'm a "disabled" latina - but I've was fired twice for missing the unstated rules. I now have a successful career, a husband, and a child. To me, the least of diagnosis is the label but a set of personalized strengths and weaknesses, some that I could not see myself.

At age 10 I was diagnosed as PDD (but my parents never told me - they said I was smart and quirky). 20 years later, when I was being evaluated for temporal lobe epilepsy, I was retested (lots, including neuropsych) and was told that I had AS. I requested my records from where my original testing had been done and found that five of the same tests had been utilized (like the infernal organize the blocks test) and the results were nearly identical. In the 20 years, I had learned a lot of coping skills, received occasional help from school and university, and figured out as much as I could. This still didn't mask it - the results were still the same only a new label was available. So what, right?

The neuropsych evaluator was able to point out a few areas of clear strength - things that I should "play up" as they make me a good employee. She also was able to point out some clear weaknesses with some methods of overcoming them. This, to me is the key. For example, I can't understand non-verbal communication, but I got some methods to try for improvement. She helped me see some limitations that I didn't realize, situations that I should avoid or limit to prevent overload (crowded stores, messy house). Since getting this information, the tips, the resources, and even a booklist - I've been slowly implementing bits. This has made me less anxious, more in-control, and intentionally practicing certain social situations. I've even been doing physical therapy to help with my motor issues.

So self-diagnosis is good and there's nothing wrong with it. Sometimes a (qualified) independent evaluator can help you see things, situations that can be improved. The resultant label is almost immaterial when compared to the potential for quality of life improvements.

Yes, one would hope that specialists know what they're doing. And, honestly, that may also be part of my wanting to get adequate understanding and an accurate diagnosis from one, since I've only had bad and non-understanding experiences with supposed experts prior to this time. I want to have a reason to trust at least some professionals, since I am becoming one myself. And I'm learning about what to do and what not to do through these personal experiences with them. Psychologists can really be a mixed bag, much like medical doctors. For example, Kylie Minogue recently admitted on the Ellen Degeneres Show that she was initially misdiagnosed as not having breast cancer and then had a nasty surprise later. She put it as "Just because somebody's got a degree and is a wearing a white coat doesn't mean they're always right." I was so pleased to hear somebody say that on national TV for once so that people learn not to blindly trust. Sometimes, your own instincts are more correct than a given doctor's, depending on the doctor.

And it would also be nice to know for sure so that I can cite the diagnosis in my upcoming talk(s). I'm giving one to a group of parents of autistic and Asperger kids at the end of this month, and it would be a little less reassuring for them to hear from somebody who doesn't have a credible diagnosis. They may question the validity of my talking to them. Even if I know for sure that I'm on the spectrum, that doesn't mean other people will be convinced of my self-knowledge, especially if they don't know me or my capacities well. It would be just my word against theirs without any expert third party to back me up through my narrative. So it's not only for my career but for other people's benefit that I'd like some kind of related diagnosis.



Yes, exactly. Just knowing I'm on the spectrum has helped me to pinpoint strengths and weaknesses of which I wasn't fully aware before. I even used them in a recent interview for my next graduate program, in addition to general personality traits. I've done massive work on myself since figuring these out and have really benefited. That's not to say I haven't become aware of other sides of myself. For example, I'm well aware that I have personality traits along the lines of narcissistic personality and obsessive compulsive personality. To be aware of one's self in one's totality is vital to making positive changes.

I just wish professionals would trust that, when I do get emotional about something, the reaction stems from instinctually knowing that what's healthy and good for me is being denied.

Update time again. Saw Dr. Gale today for about 1 1/2 hours.

We just talked the entire time, including during a little walk through a supermarket so he could observe me in the outside world.

He did most of the talking, and I felt like I had to keep reminding myself to say certain bits of information before getting too distracted and having the appointment end without them being said. But I must conclude that I truly trust his judgment, even when he plays devil's advocate in questioning my symptoms. He validates them more than anything, and I know he's just making sure to rule out other things. He acknowledged things like my intelligence, adaptability, mental plasticity, sensory struggles, and food dislikes (highly mixed up dishes with too many ingredients as I saw in the market). I feel better now because he did an equal amount of validating as he did questioning. Otherwise, it would feel like my dad doubting and discounting my troubles all over again, but this quest of mine is about self-respect at last, as I put it to Dr. Gale. It's about acknowledging that it's ok to have problems with fluorescents, sounds, chaotic social interactions, heavy driving, and needing an inordinate amount of alone time and about making sure that other important figures in my life respect that too. I realize my place on the spectrum is so low, especially these days, that it's easy to be missed by others, so I'm being more forgiving of doubters.

That said, he isn't sold that it's Asperger but is certain that there's definitely something there. He didn't want to name anything yet, but I'm going to guess PDD NOS like I previously suspected. Although, I'm also wondering whether he'll go in the direction of nonverbal learning disorder, since that can be very mild too. When I said I was giving a talk about my life on the spectrum to a group of parents, he said I would fall into the "recovered category" and that I should focus on the related symptoms and how I've learned to deal with them. That's pretty much how I planned on approaching it anyway, but I thanked him for the advice. Some people who don't know me well enough might have guessed that I would have resisted not getting the exact Asperger diagnosis, but being called "recovered" from it boosts the ego!

We talked in depth about the way that Vitamin D helps my functioning and he pressed the points that I'd never be an objective experimenter on myself and that there aren't clear double blind studies, blah, blah. I told him I knew that I could never be 100% objective with myself but I could be careful about placebo and that there are in fact some preliminary studies on D and autism. I also said I had tried a billion different things for 2 years before discovering with great surprise that D could work and that, for some reason the oil gelcap form doesn't work but dry powder capsules work. I also mentioned that I periodically go off it to test myself and consistently revert right back to my old melancholy and disconnected, random thinking within a week every single time. It's quite an obvious and strong difference. So I'm pretty sure it helps by boosting serotonin, which increases connectivity between neurons. He wondered out loud how severe or mild you'd have to be to experience such a noticeable improvement and then swiftly changed the subject. Wow, that was a bit of a debate.

He said he has shifted his focus in this assessment process because, after doing some research, he figured out that he can't really help me by requesting accommodations to extend the 6-year time window to get my therapy client hours before licensure. It's too far off, so if I were at year 5 of the 6 maximum allowed, THEN I should come to him for such a letter. But, now, he just wants to nail down what diagnosis is most appropriate so that I can proceed in other ways. I'm fine with that. He knows that I'm not wrapped up with the name of the diagnosis for identity purposes, which relieves me. I'm so glad he isn't like that other tester.

He had had a 40-minute conversation with my father, which gave rise to discussing the impulsive but ultimately healthy car purchase situation and that friends ask me for money, which I have to be assertive against. Also, he mentioned my dad was thinking of getting a trustee to help manage my finances.

We talked about narcissism in the family and myself - most notably that on the personality test called the MCMI, my narcissism score was "off the charts." (I had asked him about the results, and he answered instantly.) He said this is actually frequently found in Asperger cases, although other people can have it too. I said I had known about that side of myself and agreed that others have it, since it's definitely in my [neurotypical] family members (especially dad). I laugh that stuff off, honestly. As long as one is aware of it and keeps it under wraps, it's a good trait for achieving highly.

He recorded his debriefing about me while I was still in the room so I could hear all the information he gathered about me, which was impressive and interesting.

Unfortunately, he got the report from that previous tester that I didn't want him to read. I guess I didn't clearly enough write on the release of information form that I only authorized release of the raw test data. I warned him that much of it was false and inaccurate and would throw him off. He offered to have a separate session to go through it and have me correct the mistakes with him. How nice and patient! (Aside from him getting my money, but still, it makes me feel better than if he just read it without consulting with me on the content. I respect how up-front he is.)

I was so preoccupied with all of this that I got to my final exam 10 minutes late! Oops. Doesn't matter because I finished half an hour early anyway and feel that I did well. I guess I was much more interested in my time with Gale than getting there on time, which is extremely rare for me. I'm usually more concerned about exams on an exam day.

Thanks for the update Anathemaviolet, its great to see you're making progress and that your professional is willing to work with you to come to a mutually agreed and true diagnosis.

The more I read about your adventures the more I think I really need to go to an Autism specialist or someone with experience in Asperger Syndrome, especially in Adults.

My psychologist thinks there is nothing wrong with me, but still likes to bring up things like Depersonalization Disorder and Universal Self Acceptance as ways of describing my symptoms and thinks I should still take anti-depressants.
He says that the problem lies in me thinking I have a problem. The last visit I had he told me to stop thinking so much, try and remove myself from the situation and just enjoy it for what it is. If you know me, you know that I can't just stop thinking or remove myself, its nigh on impossible.

Ahh well, another visit tomorrow. I'm going to try and stand up for myself and see how it goes.

Thanks for the updates, it is very inspirational for me.

I'm glad this is inspirational and informative to you.

Oh my god, do I ever know what you're going through! Here is a direct quote from my previous tester's awful report:

"Laura has also had an obsessive preoccupation with identifying and confirming her own pathology....Although these diagnoses appear to represent some aspect of Laura's real struggles, they also appear to represent a central struggle of identity, regulation difficulties, as well as a deep longing to be taken care of. In this way, the diagnosis for Laura may serve as a concrete way of defining herself, providing her with a sense of safety and control over her symptoms. Her preoccupation with diagnosing, however, seems to be interfering significantly with her ability to function effectively, develop and maintain healthy relationships and learn about who she really is."

Wrong, wrong, and wrong. And does the tester really know "who" I am? Why does she assume I don't already know who I am? I have never wanted to be taken care of at any level and tend to want the opposite - for people to leave me to my own devices, even when they offer care. The only thing that was right in that entire paragraph and not opposite from the truth is the part about the diagnoses representing my struggle, but even then she minimizes it and speaks as though my residual AS symptoms are not "real" in their own right and something else is.

Seriously, tbam, don't stand for this type of thing and ask your shrink to clarify as much as possible by asking you questions about your subjective experience. Otherwise, you will be treated as though you were someone else. Yes, I know that you strive to understand yourself, and that's a GOOD and healthy thing! Thinking about it is necessary in the process of problem solving and reducing your problems. With the help of a competent specialist to assist in the process, you'll really be golden.

Although subjective experience can be highly flawed and biased, there are also times when it can provide clues to the truth - even biological truths affecting your mental experience. And this is what AS and autism are all about, right? A biological predisposition causing behavioral and psychological effects. Check this out...I found an article about Aspies having too much of an enzyme which causes their overstimulation problems:

http://www.buzzle.com/editorials/3-11-2006-90955.asp

Hey Anathemaviolet.

Just an update for you.

Went to my psychologist and tried to emphasize that i'm not going to just stop thinking, that I don't think I have depersonalisation disorder because I don't have any distinct feelings of unreality, or experience life from a 3rd person perspective.

That I think my symptoms, or me as a whole is better explained by Asperger Syndrome than anything I have read so far, but I am passive and will usually not disagree with anyone, even him, so in the therapy and afterwards I will tend to agree with him and his hypothesis(es?) until it has had time to sink in.

I told him my wife agrees with him that I don't have a problem and there is nothing wrong with me except for that I think I have a problem and surprisingly he came back with "I never said there was nothing wrong with you".

He had a brief read over another essay-long self-examination letter of my symptoms that I gave him and he said that the best thing for now would be to see an Asperger specialist as he is not that experienced in the field, even though he doesn't think that is my problem, he said it would be a bit more conclusive and provide a better base to work from.

I asked him what he thought was wrong with me, and he said that he thinks my problems revolve more around anxiety than anything, but he thinks seeing an Asperger specialist would be the best course of action at the moment.

He says that if I have Asperger Syndrome, it would be very mild, and it may be difficult to get a diagnosis, but he agreed that regardless of the coping mechanisms the Syndrome is still there, its just a matter of how best to progress.

I agree with him in a way, however I feel that my anxiety is brought about by the complications in day-to-day life that AS causes. He acknowledges that he doesn't think i'm depressed in any way, which was good too.

I told my wife what he said and she went nuts at me, saying that the psychologist changes his mind every fortnight and its something new every time. But she seems to have calmed down now, which is semi-okay. However I hate that I can't share Aspergers or talk about how I feel with my wife.

Anyways, let me know how you go. Thats my update for now! hehe

trust yourself. You know yourself better than anyone--go with it.

If you can, go to he best--get an appt. with Tony Atwood or go to the top ASD centers nearest you. If you still don't get an AS dx then I would move forward. Just accept yourself as partly AS and partly NT--many people are like this--I think I might be. This is super fine with me. I would never trust some idiot psych to assess me--I know me and have spent enough time thinking about myself in relation to others and my world.

No real news, since I haven't met with the Dr since the last time yet. He's supposed to schedule our next appointment when he's done scoring the brief testing I did with him the time before last. He's a busy man with multiple projects, and I'm not too worried about it. I did send him this e-mail, though:

"Hello, Dr. Gale.

I had my talk recently [for wrongplanet: yes, the same one I made a separate post about] and have linked it here for your download, if that's helpful to get a fuller picture of my experiences. I may not have mentioned certain things to you that I did on here. I understand if you don't have the time to listen to it, but it may be helpful and may serve as a guide for asking me more clarifying questions.

My 45-minute talk at the Armenian Autism Outreach on April 29:

http://tinyurl.com/6x5nkq

(I'm not sure why my professor who introduced me said I got a diagnosis even though I haven't at this point! So ignore that part.)

Also, I found this 12-minute video about school accommodations for adults with Asperger interesting, including seeing the behavior of the 2 presenters in it who were diagnosed. They don't present like the children did in your video clip that you showed me.

http://www.researchautism.org/resources/AspergerDVDSeries.asp

Thanks and see you next time."

He responded the next day with:

"Hi Laura,

Thanks for the information. I probably won't have time to review this until later in the week, but I appreciate you sending this to me.

Dr. G"


Works for me. I'm glad he took the time to respond and will consider all of it.

I've had 3 sessions with my new therapist, and he keeps acknowledging that I do have Asperger and that many adults with it can function reasonably well in their lives despite some ongoing difficulties. He recognized and reflected back to me how social skills troubles played a large part in my past and that I've had "so many of the symptoms." We're actively working on my problem with initiating new conversations with strangers in order to create new friendships, which I desperately need.

He believes Asperger isn't something you overcome one day and no longer qualify for but, rather, something you learn to manage and deal with through special efforts. I would agree, based on my personal experiences and the fact that it's so physical in nature (neurological structure and chemistry). I know all my physical structures haven't changed at all, but that I've picked up some skills and management techniques over the years. It's not over yet, and it may never be, but I don't see that as a death sentence. Just another fact about me like hair color.

I do feel that the DSM criteria fit me, but you won't see them all manifesting in every situation. I've had to describe to him the situations that bring some of them out. The previous tester judged me based only on what he saw of me in the room with him, but I know that won't cut it if you really want to understand me. I ended up canceling the report that tester was going to write so as not to bother spending the extra money if we have intrinsically different understandings of Asperger (leading to him say I don't even have a PDD at all, which I know is false) and I have no use for his report at this point when my current therapist is giving me what I need now. That felt good, I must admit.

I'm so incredibly relieved to have my struggles finally acknowledged by a professional rather than denied. Honestly, I'm still in a bit of denial/shock and need time for it to sink in. The emotional side of me fears he'll turn around and change his mind later, but I know logically this won't happen. Other than that, I've never felt so at peace.

Yay.

What you're experiencing is various people seeing AS in different ways.

Some see it as Autism with adequate speech as an adult; many people with a diagnosis of Asperger's won't fit this (don't look at the criteria). Apart from the semantic problems, it affects people the same way as Autism does.

Some see it as a "mild" disorder [compared to Autism], that doesn't affect someone in the same way as Autism does, it just causes "troubles" rather than the near impossibility of doing something that Autism makes.

Both are right, depending on how you look at it.

Yeah, the tester always emphasized that there has to be SEVERE impairment and that there's no room for mildness in the criteria.

The problem I have is, how do you judge what is severe enough to count? Something that really bugs you and holds you back from doing things as well as you'd like to? Or something that stops you from even being able to do them at all and makes you a total wreck and failure at thriving in life?

I think a spectrum within the spectrum disorder exists and that just being significantly bothered on a regular basis is enough. It's a value judgment, I'm sure, but I'm appreciating having a like-minded therapist.

I am really happy for you, I agree it does take a while to get over the shock and isn't it wonderful to feel at peace with yourself after all this time

*Offers some chocolate to anathemaviolet*

The friendly DSM, which also states that the social impairment is as severe as Autism, it's just of a different manifestation, on the disorder of Asperger's:

Your question, it depends on which institution you talk to, but I'd say it's closer to the latter than the former as it's written, and in the outcome of those diagnosed, it's the norm (outcome studies). Something like the Broader Autism Phenotype or "mild" Asperger's makes it difficult in interacting socially, but not to a level that's almost impossible for most with such, as well as working with other people.

Everyone has difficulties in doing things they want to, whether being physically unable to, or lacking the cognitive potential; Autism/Asperger's makes it hard to do nearly everything without external help, as it takes the choices away. Whereas, those without such, just move on to the next desirable choice.

Some people use the terms, "full-blown Asperger's" and "mild Asperger's" to differentiate between the two types of Asperger's; the spectrum within the spectrum so to speak. These are usually used by researchers though, rather than being a diagnostic concept.

One of my friends when getting diagnosed, her counselor did not ever see her during social situations. So they went to an autism conference together. And then she became incredibly obvious just from the overload, and her counselor was shocked. But it was just that she was now in an unstructured and chaotic social situation.