Truly in need of help from other late-diagnosed adults.

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GrandTuringSedan
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18 Dec 2012, 3:11 am

I was diagnosed at 42, just this past year. I feel like a little kid, still naive and affraid of the world. I don't understand how anyone thinks. That goes for the therapists and psychiatrists I've had over the years.

My childhood was a living hell, then I struggled in mental health for 20 years as an adult. I was misunderstood, misdiagnosed (6 different ones over the years), and mistreated. It was far more brutal than I could possibly relate here. Sometimes, I have trouble believing what I've been through, myself. It actually has the appearance that I've been systematically misunderstood. I think I've lost the ability to communicate in an honest and direct way. It's like over my childhood, I learned how to set aside what I know about myself in order to deal with the world. "What I know about myself doesn't matter. It's who they think I am, and what they are going to do to me that I really have to deal with." What's made that doubly damaging is the fact that I have no idea how people think, I just know that they are probably going to hurt me and I'm not going to understand why or see it coming.

My son was having trouble in school last year. One of his counselors mentioned he might have an ASD. I looked into it and found a near perfect description of what I've been experiencing my entire life. (Felt hopeful.) When I took this to my therapist, he just rattled off a couple of reasons why I couldn't possibly be autistic. He was dismissive. I was defensive. I asked him,"If you were wrong, how would you know?" (Looking for falsifiability.) I mentioned how I relate to math better than I do to people. He got shitty with me and said, "Then maybe you should go back to school!" Possibly a dig at how I haven't really acheived anything in my life; I think he perceives me as lazy and entitled.

I never saw him again. (I intended to, but I couldn't keep the appointment, now I'm sure it was for the best.) Instead, I went to a specialty autism clinic. I was diagnosed on the spectrum, based mostly on what my mom told them about my childhood/infancy.

So I'm vindicated, sort-of, but I have no idea if I can trust psychology again. It seems like they cultivate confirmation bias and they are far too comfortable with patchwork theorizing (15 theories working together to explain 3 phenomena- it just doesn't seem honest). The concept they have of me must be nearly 180 degrees from who I am. I honestly don't think they are bad people, but I am terrified of the damage their ideas have caused me. And the last thing they want is to hear that from a patient. They treated me like s**t because they had the wrong idea about why I was doing what I was doing.

Can anyone relate to any part of this? I want help putting my life together (mostly for my sons), but I've gotten to the point where I don't know if I can afford to trust professionals anymore. It's even lead to friction between me and my son's therapist. It doesn't matter how smart or great a person they are, do they have the right understanding ??



JBlitzen
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18 Dec 2012, 3:21 am

I've been reading a wonderful manga book called "With The Light, Raising an Autistic Child". Many of the early situations the mother finds herself in focus on the wide divergence in competency and passion between varying professionals, even within the same fields.

Based on real interviews and stories, the character would go to one doctor who would dismiss her child as deaf. Then she'd go to another, who'd immediately identify him as autistic, clanging a bedpan down on a desk and observing his jerking reaction to demonstrate that he's not, in fact, deaf. Her experiences with teachers, administrators, support services, friends, they all share that general pattern.

It's very poignant and interesting to see how different encounters lead to such different experiences. And there's definitely a sense that, as with any other field, there are some people you enjoy having worked with, and others who you rightfully resolve to avoid at all costs. Sometimes you hire a horrible contractor, sometimes you hire an awesome one.

So it is with psychology.

I recommend that book, if you're interested.

http://www.amazon.com/With-Light-Raising-Autistic-Child/dp/0759523568

I also recommend "The Speed of Dark", by Elizabeth Moon, where the central character, written from a first person perspective, is a high functioning autistic adult modeled after Moon's own autistic son.

http://www.amazon.com/Speed-Dark-Elizabeth-Moon/dp/0345481399/ref=sr_1_1?s=books&ie=UTF8&qid=1355818645&sr=1-1&keywords=the+speed+of+dark#reader_0345481399

In fact, I dare you to open that link, scroll down to the first page of chapter 1 in the preview, read the first 5 paragraphs, and not be awestruck at how closely you identify with the protagonist as he meets with a psychologist.

Note particularly the line "Everything in my life that I value has been gained at the cost of not saying what I really think and saying what they want me to say."

I guess my point isn't to fill your bookshelf, but rather to illustrate that you aren't alone. Your experience is very common, and just as you'll often have horrifically stupid encounters with psychologists and other professionals, so too you'll sometimes have wonderfully positive encounters with them. Keep trying, and trust your instincts if you get a bad vibe about someone in particular.



GrandTuringSedan
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18 Dec 2012, 4:06 am

Note particularly the line "Everything in my life that I value has been gained at the cost of not saying what I really think and saying what they want me to say."


I did read the first few pages and it was pitch perfect. There may be somewhere to go from where I am. I can't thank you enough. You helped me a great deal.

Coincidentally, the line you quoted illustrates precisely the type of interpersonal awareness that my therapist said prooved I wasn't an aspie. According to him, "Autistic people don't consider what other people think."



JBlitzen
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18 Dec 2012, 4:30 am

helles
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18 Dec 2012, 4:32 am

Going to get my diagnosis this January but had an expert evaluation earlier this year. I have four sons, I suspect two of them to be on the spectrum.

It has been a steep learning curve, as I only found out what AS is this January/February. I have found WP to be the best place to find information, there are some excellent threads about almost everything. Much of the information you can find on the internet is written by NT people and much of it is not very good.

I do not have much experience with psychologists I have only attended a few sessions with two different psychologists. One of them was only asking about my childhood (that was before knowing about AS) that did not work at all. The other one was a very nice lady but did not think that I should give much thought to AS (she was well meaning, but she did not know much about how AS people think), I think it is necessary to find somebody who specializes in autistic people to find somebody who is helpful. Take a look around WP, there are other threads about psychologists.


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PartlyRobot
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18 Dec 2012, 5:04 am

There are professionals and then there are professionals. I would hazard that, like the rest of the population, most therapists have no idea what they are talking about when it comes to AS.

Do you feel like you need to keep going to therapy? Personally, I feel like I get more out of interacting with other Aspies than whatever a therapist would do. But I also am pretty good at self-managing anxiety and depression... I think. It's executive function I have trouble with.

I'd rather get tips from people who know what it's like.



sinsboldly
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18 Dec 2012, 5:30 am

We have a long lived thread on WP called the Dino Aspie (Ex) Cafe. Most there are late diagnosed Aspies. Read over our thoughts, we were all like you, ya' know.

http://www.wrongplanet.net/postt32122.html


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GrandTuringSedan
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24 Dec 2012, 2:35 am

PartlyRobot wrote:
There are professionals and then there are professionals. I would hazard that, like the rest of the population, most therapists have no idea what they are talking about when it comes to AS.

Do you feel like you need to keep going to therapy? Personally, I feel like I get more out of interacting with other Aspies than whatever a therapist would do. But I also am pretty good at self-managing anxiety and depression... I think. It's executive function I have trouble with.

I'd rather get tips from people who know what it's like.


I have trouble with executive function, but I can't tell how bad it is (most of my difficulties have been presented to me as discipline problems and it's hard to sift out the misatribution). The emotion regulation is difficult for me. I think my attention problems may require meds.

I think I am begining to see the utility of interacting/communicating with other aspies.

Many thanks!



GrandTuringSedan
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24 Dec 2012, 2:54 am

helles wrote:
Going to get my diagnosis this January but had an expert evaluation earlier this year. I have four sons, I suspect two of them to be on the spectrum.

It has been a steep learning curve, as I only found out what AS is this January/February. I have found WP to be the best place to find information, there are some excellent threads about almost everything. Much of the information you can find on the internet is written by NT people and much of it is not very good.

I do not have much experience with psychologists I have only attended a few sessions with two different psychologists. One of them was only asking about my childhood (that was before knowing about AS) that did not work at all. The other one was a very nice lady but did not think that I should give much thought to AS (she was well meaning, but she did not know much about how AS people think), I think it is necessary to find somebody who specializes in autistic people to find somebody who is helpful. Take a look around WP, there are other threads about psychologists.


I'm still learning a lot, myself. I haven't quite gotten the knack of finding the things I need to know.

It seems psychology deals only in thought content, desires, emotional causation, trauma, ... It's almost as though they don't allow a theory that can not be be used to blame either the patient or someone in the patient's life. I don't think they find neurological causation to be satisfying; it doesn't require a demon.

Good luck to you, and thank you.



InKBlott
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24 Dec 2012, 5:31 pm

GrandTuringSedan wrote:
Note particularly the line "Everything in my life that I value has been gained at the cost of not saying what I really think and saying what they want me to say."


I did read the first few pages and it was pitch perfect. There may be somewhere to go from where I am. I can't thank you enough. You helped me a great deal.

Coincidentally, the line you quoted illustrates precisely the type of interpersonal awareness that my therapist said prooved I wasn't an aspie. According to him, "Autistic people don't consider what other people think."


Oh my. That's sadly hilarious. I've spend my life having to consider what other people are thinking, gleaning every tiny clue, and running lightning quick schematics so I can figure out what to do or say next. It's been exhausting. Presumably NT's do not have to do this exhausting work because they can sense this stuff on some intuitive level. I have a feeling that I know about NT's in a way that no NT has ever bothered to know me because I have had to to survive.



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25 Dec 2012, 12:13 am

GrandTuringSedan wrote:
I think I've lost the ability to communicate in an honest and direct way. It's like over my childhood, I learned how to set aside what I know about myself in order to deal with the world. "What I know about myself doesn't matter. It's who they think I am, and what they are going to do to me that I really have to deal with."

I can relate to this. I find it so difficult to express myself verbally that lately I have stopped talking very much.

Quote:
So I'm vindicated, sort-of, but I have no idea if I can trust psychology again.

It's so hard to find a good doctor. I don't trust them; but you have to work with them. A lot of them don't know much about autism.



sinsboldly
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25 Dec 2012, 4:37 am

InKBlott wrote:
GrandTuringSedan wrote:
. I have a feeling that I know about NT's in a way that no NT has ever bothered to know me because I have had to to survive.


I know the feeling. Also those NT that just take as granted that I think becoming MORE like NT is my goal. The longer I realize I am not like them the more I don't care to 'fit into' their world. But every therapist I have encountered takes it as a given that I want to integrate into NT society and that would define 'success' in our treatment model. I want to learn how to be more like me! I want to be a better autistic and let that flourish.


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TedMart
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31 Dec 2012, 6:35 am

I'm very new to this whole thing myself, only just discovering my own position on the spectrum and still researching this highly overlooked topic, but from simple need to cope my whole life I have developed certain theories to get me through, and one I strongly believe in is to Trust my own instincts above all else.

It would be very, very easy for me to assume that since I feel somehow 'different' and an outsider, that my initial instincts are probably wrong, however I have found this is NOT true.

I have also had some troubles with therapists in the past, and it turned out I was right to get myself away from them when their misguided attempts began to increase my confusion.

So, in my case anyway, and as counter-intuitive as it may feel, I find that self-empowerment and even a self-directed bias gives me a more true comprehension of what is really happening.

I am very careful now not to allow my self-doubt to overpower my instincts.



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31 Dec 2012, 9:39 am

In the States, one magically vanishes on the Autism spectrum once you hit the age of majority. Oh, the folks that are on the
lower end still get services. Their parents petition for guardianship or conservatorship, but I doubt anyone on this list falls there.

If you had managed to muddle through life, however painful, the powers that be considered you "cured". Or so it seems. I live in a major metro area, and there is hardly any professionals that diagnosis adults, let alone do any sort of therapy for them.

It is a crime.

My husband functions socially on a 12 year old level. His executive functioning skills are dog s**t. He lucked out having a job, where he did basically one thing with minimal human contact for 28 years. Then the company got new owners and everything changed. Fior had to deal with meetings, multi tasking, and 10 humans on a daily basis. He lasted 4 months.

After a world class melt down, he was put on disability. The company does NOT want him back. Fior was originally diagnosed with depression, and OCD. The work place shrink said he had schizoid personality disorder. I thought all of that was BS. Yes, he had situational depression, OCD-no, and certainly not schizoid whatever.

We paid out of pocket for his Autism diagnosis, by the best therapist in the area. The one, who's diagnosis, no one fights. Now the company can't trash him outright since Autism is covered under the ADA. They will give him early retirement. The diagnosis protected Fior's interests.

BUT: Fior still has the same problems. He is still searching for a therapist who has a clue about Adult Autism. I'm waiting for a call from a shrink who works with adults with ADHD. Folks with ADHD also have issues with executive functioning skills. I hope this guy is worth the wait.

His current shrink works on problems. It is better to have a set goal, then to do that wandering exploration nonsense. It is for me, anyway.

So...Fior's diagnosis got him piece of mind, and his company not being able to out right fire him. It did nothing to help him. His therapy works best when he has a specific goal in mind, with steps on how to work it. Therapy that is meandering, talking about things in his past, just cause him more anxiety because he will ruminated about it.


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sisugirl
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01 Jan 2013, 11:29 pm

.

Quote:
So I'm vindicated, sort-of, but I have no idea if I can trust psychology again.


I am an Aspie and a psychologist. I admit that most psychologists don't "get" Asperger's. However, don't judge all psychologists by your experience with one unknowledgable, defensive person. Sounds like this person is like the mechanic who doesn't know what is wrong with your car and just guesses, then gets defensive when you suggest he might be wrong. Some people can't admit they don't know something.