Finally Saw A Decent Doc - ASD Assessment Update

[zozie]

This reminds me of my experiences on my road to diagnosis 20+ years ago. The neuropsych I saw first, who I'm told was at the top of her field when it came to acquired brain injury (but was clearly clueless with developmental ones!), did a full day assessment with me, and then in her written report contradicted herself several times, had poor grammar, and after extensive discussion with me on some subjects, wrote all my concerns off as non-existent! Not even "unimportant" , but "non-existent! When she gave me the results (before I saw the report) she tried to tell me that I had no problems, and there were no problems with the way my brain was wired in the sense of being NT, not in the sense of "being different is ok)! ... not too terribly long after (I believe lass than a year) the learning disabilities person who did a second assessment could tell, before she was even half done, and without scoring anything, that there were very obvious differences between me and someone who was 'typical!! It was such a relief to know it was so obvious when someone who actually knew what they were looking at saw me!

When I finally saw (a third person) who could officially diagnose me, she was quite compassionate about how long it took me to get a diagnosis, and stated her regrets about it in the report!

Man, that first doc straight up erased you, and an expert at that. The gaslighting that goes on from doctors to patients just blows my mind. It's criminal that it's so prevalent.

And the thing is, there's so little agreement or communication between types of doctors. That it should be so obvious to a doc who dealt with learning delays and "non-existent" to a doc dealing with brain injuries, and then to finally be seen by an actual professional. My young PsyD seemed to feel really bad for me, too, just like your third person.

 

[zozie]

I'm glad to hear zozie that's it's become a little more hopeful. It's amazing how hard we have to battle for decent medical care.

Ain't that the truth. I am going to be the good kind of shrink when I get licensed and trained. None of this "you're who me and my power-tripping, absolute-truth-insisting, I'm-so-terrified-of-being-wrong-that-I'll-destroy-anyone-who-challenges-me ego say you are" nonsense. For heavens sake.

 

[WolfSpirit]

Man, that first doc straight up erased you, and an expert at that. The gaslighting that goes on from doctors to patients just blows my mind. It's criminal that it's so prevalent.

And the thing is, there's so little agreement or communication between types of doctors. That it should be so obvious to a doc who dealt with learning delays and "non-existent" to a doc dealing with brain injuries, and then to finally be seen by an actual professional. My young PsyD seemed to feel really bad for me, too, just like your third person.

Yeah, my speech pathologist at the time agreed that the neuropsych appt. did more harm than good. Made me not feel like communicating much with anybody for a while. Especially verbally. And I had a hard enough time with the concept in the first place!

I don't think the learning disabilities specialist was actually a doctor, or at least not a medical one, which is why she couldn't give me an autism diagnosis, but she did recognize that I was probably autistic, and included the dx criteria for AS in her report in order to help with furthering my dx with whoever I saw next! (a developmental pediatrician, in the end, even though I was an adult.)

It's always such a good thing when you actually get someone who's a human being and can be compassionate!

 

[Mia]

Ain't that the truth. I am going to be the good kind of shrink when I get licensed and trained. None of this "you're who me and my power-tripping, absolute-truth-insisting, I'm-so-terrified-of-being-wrong-that-I'll-destroy-anyone-who-challenges-me ego say you are" nonsense. For heavens sake.

Things have to change. Females are continually diagnosed with so many difficulties that are not autism, but very often comorbids. Because someone who was prominent wrote a limited study which indicated that women cannot have autism.

It's been disproven, yet the medical community was and is effected by it. Indicating that females with autism have 'male' brains if we are autistic. I don't have a male brain, I'm female. It's so frustrating to read things like that.

 

[SDRSpark]

I'm taking a few psychology classes in uni right now, and both of my profs have made it very clear that an individual can go to 4 different mental health specialists and get 4 different diagnoses.

This really makes me wonder what the point is. People tell me that my own lived experience and research doesn't have the same weight as a professional opinion...but a professional opinion seems utterly useless when you get a different answer from every professional you go to.

If the results aren't repeatable, they're not accurate, as far as I'm concerned.

 

[Thinx]

Have you ever watched the series House? Where Hugh Laurie plays a Dr who diagnoses tricky cases. He's often juggling a number of different diagnoses along with his team, they often are making educated guesses. I guess it probably does happen like that in hospitals, for mental and physical health issues, and neurologically based issues.

Presumably technology will help with this, further down the line. Brain scans, scans of brain activity and other technical advances should help take the guesswork and ego related persiflage out of the process.

 

[SDRSpark]

Have you ever watched the series House? Where Hugh Laurie plays a Dr who diagnoses tricky cases. He's often juggling a number of different diagnoses along with his team, they often are making educated guesses. I guess it probably does happen like that in hospitals, for mental and physical health issues, and neurologically based issues.

Presumably technology will help with this, further down the line. Brain scans, scans of brain activity and other technical advances should help take the guesswork and ego related persiflage out of the process.

I think "educated guesses" are a lot more forgivable in an emergency situation (like is often portrayed on House) where you have a limited time to really think it through, you have to do the best you can to get someone to not die while you figure out specifics.

There are also incredibly complex, difficult or rare cases where doctors really do have to just guess because they've tried everything and they're out of ideas. And even in those cases, it could be an instance of the doctor not being current on training or not listening to their patient.

But autism isn't all that complex, all that rare, all that difficult - and nor are other mental health conditions really. It's just that they have poor training, out of date training, won't listen to us (because I guess we're too "crazy" to know our own reality or something) and the research excludes adults and especially women and AFAB individuals.

The mental health/psych world is a mess, unfortunately.

 

[Thinx]

I think "educated guesses" are a lot more forgivable in an emergency situation (like is often portrayed on House) where you have a limited time to really think it through, you have to do the best you can to get someone to not die while you figure out specifics.

There are also incredibly complex, difficult or rare cases where doctors really do have to just guess because they've tried everything and they're out of ideas. And even in those cases, it could be an instance of the doctor not being current on training or not listening to their patient.

But autism isn't all that complex, all that rare, all that difficult - and nor are other mental health conditions really. It's just that they have poor training, out of date training, won't listen to us (because I guess we're too "crazy" to know our own reality or something) and the research excludes adults and especially women and AFAB individuals.

The mental health/psych world is a mess, unfortunately.

Yes you make a good point, but I suppose rather than expecting any of that to change any time soon, technology may hold the best hope for us? New technology is something many people value where clearly the other issues you describe are not priorities, or we'd already be having a better experience than we are; the successive stories of clinicians whose comments and reports reveal them to be incompetent are piling up, and as you say, nobody much except the affected group seems to care.

 

[zozie]

This really makes me wonder what the point is.

For those of us who are well-researched, the point is not to get an answer from a doctor, but to regain a measure of power from having answers shoved down our throats. That is, to get the right answer, and to navigate the treacherous waters of "knowing too much for a non-doctor".

It's not about medical knowledge, even though I just talked about answers. It's about the structures of power surrounding those who possess, societally, a greater measure of power over others.

That said, even if we are not well-researched, we suffer the same sense of powerlessness, only we may not know why until we start digging.

That is my (well-researched) opinion, anyway. I wish it had more to do with actual mental health, but alas.

 

[zozie]

the successive stories of clinicians whose comments and reports reveal them to be incompetent are piling up, and as you say, nobody much except the affected group seems to care.

As I take an intro psych class, taught by this wonderful theoretical psychologist who would describe himself as "neurodivergent", preferring that to diagnostic labels, I'd say that you are correct. The field of psychology is weirdly resistant to altering its methods or its axioms.

The example of physics as a science came up in class, and how it has radically shifted its "basic truths" over the years to advance in sophistication and understanding of our world, but psychology has not changed its axioms, nor is it likely to. It relies heavily on peer-reviewed research, which rejects anything upsetting the status quo.

So, really all you're doing as a psychologist is demonstrating how eagerly you'll fall in line. The more you support the established research, the greater your chance of being hailed as an expert in the field. It's stupid.

Or, if you're like my professor, you use your wit and intelligence to both obey the rules and subvert them, which is how I suspect I will have to proceed if I'm to follow a similar path.

 

[SDRSpark]

As I take an intro psych class, taught by this wonderful theoretical psychologist who would describe himself as "neurodivergent", preferring that to diagnostic labels, I'd say that you are correct. The field of psychology is weirdly resistant to altering its methods or its axioms.

I really like the term "neurodivergent". As opposed to the various ways of saying "you're just different" which I grew up with (and which are dismissive as heck), "neurodivergent" explains WHAT is actually different, without the connotation of disorder or the necessity of strict diagnostic criteria.

 

[WolfSpirit]

Have you ever watched the series House? Where Hugh Laurie plays a Dr who diagnoses tricky cases. He's often juggling a number of different diagnoses along with his team, they often are making educated guesses. I guess it probably does happen like that in hospitals, for mental and physical health issues, and neurologically based issues.

Presumably technology will help with this, further down the line. Brain scans, scans of brain activity and other technical advances should help take the guesswork and ego related persiflage out of the process.

I believe the professional term is 'differential diagnosis'.

Something society is finally admitting to is that medicine in general is as much art as science, and involves a lot of guessing and ruling things out.

I'm not optimistic that technology is going to help a whole lot, because you still need a human brain behind it all to interpret it, and the technology is only as good as the understanding of the person reading the output. I'm not saying that technology can't help, or that we won't learn thing that allow us to use technology to help with such things, just that as mysterious and complex as the human brain is, I don't think we're ever going to fully understand it.

And then there's the whole thing about being able to make science say whatever you want it to, to a certain extent. Again, it all boils down to interpretation.

It would be nice if we could take ego and bias out of such things, but I don't expect that to happen, certainly not any time soon.

 

[WolfSpirit]

I think "educated guesses" are a lot more forgivable in an emergency situation (like is often portrayed on House) where you have a limited time to really think it through, you have to do the best you can to get someone to not die while you figure out specifics.

There are also incredibly complex, difficult or rare cases where doctors really do have to just guess because they've tried everything and they're out of ideas. And even in those cases, it could be an instance of the doctor not being current on training or not listening to their patient.

But autism isn't all that complex, all that rare, all that difficult - and nor are other mental health conditions really. It's just that they have poor training, out of date training, won't listen to us (because I guess we're too "crazy" to know our own reality or something) and the research excludes adults and especially women and AFAB individuals.

The mental health/psych world is a mess, unfortunately.

I agree with the first part of what you're saying, but as for autism, it actually is pretty complex, especially when you take in to consideration how differently we all are, and the different presentations it can have. And it was only ... about 20 years ago that society believed autism was incredibly rare! (I remember what term paper I was writing for a psychology class when that started to change.)

Other mental health issues can be fairly complex, and again with the huge variability among people, two people with the same mental illness can present quite differently. And then there's the whole societal thing where we've been trained to ignore such things, so many people are out of touch with their own emotions and mental (and physical) states. (It's a conversation I have often with an NT friend/mentor) And how often do we hear that psychiatric medications are really mostly just guesswork? Even the doctors who specialize in such things don't really understand how they work. It's all guesswork. Again, it comes down to "the human brain is incredibly complex, and we're just beginning to understand how it works".

I do agree there isn't enough training, are too many people who let their own ego get in the way, and aren't open minded to things outside their own beliefs or perspective. (Theory of mind issues anyone? ) and people who won't listen to what they are told/discredit people who are 'too different' from them, and the whole gender bias thing.

Society is f*cked up, but what else is new? Colonialism is at fault for a lot of that, but part, unfortunately comes from distorted and exaggerated expressions of evolutionary survival traits, and I don't know if we'll ever solve those issues. Doesn't mean we don't keep trying though! As hard as the fight for equality is, it is a necessary one.

 

[WolfSpirit]

For those of us who are well-researched, the point is not to get an answer from a doctor, but to regain a measure of power from having answers shoved down our throats. That is, to get the right answer, and to navigate the treacherous waters of "knowing too much for a non-doctor".

It's not about medical knowledge, even though I just talked about answers. It's about the structures of power surrounding those who possess, societally, a greater measure of power over others.

That said, even if we are not well-researched, we suffer the same sense of powerlessness, only we may not know why until we start digging.

That is my (well-researched) opinion, anyway. I wish it had more to do with actual mental health, but alas.

Agreed. Which makes me remember that it's a matter of finding the right balance in expressing oneself when trying to get validation from said professionals. Especially in this day and age where autism is so much more known. If you push too hard, you come across as insulting or a 'know it all', and will be dismissed, perhaps as a hypochondriac, but if you don't push hard enough, you're also dismissed, perhaps because they didn't have enough information for you to 'qualify'. . It's always seemed to me that getting a diagnosis as an adult, especially if family isn't involved, involved a considerably amount of social skills and 'social engineering', or perhaps just emotional intelligence, I dunno. All of which are difficult for those of us on the spectrum!! ... And then, there's the pitfall of masking too much sometimes too. . It's all so complicated! ... And that's all from my experiences years ago, plus what I've heard others say occasionally since. (and a few comments from my current autism specialist, whose autism contract (all 1/2 day a week of it!) is now entirely - used to be only mostly - about diagnosing adults.

Oh, speaking of, I did gain a new appreciation for the difficulty of diagnosing adults, years ago, when I wrote a paper on the subject for my abnormal psychology class. Wound up learning a lot more than I thought I would from that paper.

 

[WolfSpirit]

As I take an intro psych class, taught by this wonderful theoretical psychologist who would describe himself as "neurodivergent", preferring that to diagnostic labels, I'd say that you are correct. The field of psychology is weirdly resistant to altering its methods or its axioms.

The example of physics as a science came up in class, and how it has radically shifted its "basic truths" over the years to advance in sophistication and understanding of our world, but psychology has not changed its axioms, nor is it likely to. It relies heavily on peer-reviewed research, which rejects anything upsetting the status quo.

So, really all you're doing as a psychologist is demonstrating how eagerly you'll fall in line. The more you support the established research, the greater your chance of being hailed as an expert in the field. It's stupid.

Or, if you're like my professor, you use your wit and intelligence to both obey the rules and subvert them, which is how I suspect I will have to proceed if I'm to follow a similar path.

Subversives are my favourite type of people! (the intelligent, rational, respectful kind, not the conspiracy theorists, or fringe radical kind).

 

[SDRSpark]

I agree with the first part of what you're saying, but as for autism, it actually is pretty complex, especially when you take in to consideration how differently we all are, and the different presentations it can have. And it was only ... about 20 years ago that society believed autism was incredibly rare! (I remember what term paper I was writing for a psychology class when that started to change.)

Other mental health issues can be fairly complex, and again with the huge variability among people, two people with the same mental illness can present quite differently. And then there's the whole societal thing where we've been trained to ignore such things, so many people are out of touch with their own emotions and mental (and physical) states. (It's a conversation I have often with an NT friend/mentor) And how often do we hear that psychiatric medications are really mostly just guesswork? Even the doctors who specialize in such things don't really understand how they work. It's all guesswork. Again, it comes down to "the human brain is incredibly complex, and we're just beginning to understand how it works".

I do agree there isn't enough training, are too many people who let their own ego get in the way, and aren't open minded to things outside their own beliefs or perspective. (Theory of mind issues anyone? ) and people who won't listen to what they are told/discredit people who are 'too different' from them, and the whole gender bias thing.

Society is f*cked up, but what else is new? Colonialism is at fault for a lot of that, but part, unfortunately comes from distorted and exaggerated expressions of evolutionary survival traits, and I don't know if we'll ever solve those issues. Doesn't mean we don't keep trying though! As hard as the fight for equality is, it is a necessary one.

I'm not certain that "complex" is the best term to use to convey what I intended (though I can't think of a better term right now).

Yes, autism and mental health is complex. But it shouldn't be so much of a mystery that you get a different diagnosis from every professional you happen to encounter. There's no excuse for that.

Why would I trust any professional diagnosis, that being the case? If I go to multiple doctors in order to get a diagnosis, am I "diagnosis shopping" until I get the one I want? If I do get a diagnosis, how do I know it's the right one? These are questions I don't feel I should have to ask.

 

[WolfSpirit]

I'm not certain that "complex" is the best term to use to convey what I intended (though I can't think of a better term right now).

Yes, autism and mental health is complex. But it shouldn't be so much of a mystery that you get a different diagnosis from every professional you happen to encounter. There's no excuse for that.

Why would I trust any professional diagnosis, that being the case? If I go to multiple doctors in order to get a diagnosis, am I "diagnosis shopping" until I get the one I want? If I do get a diagnosis, how do I know it's the right one? These are questions I don't feel I should have to ask.

Oh, that reminds me. Now that there are more options and better awareness of autism, hopefully this doesn't happen to people, but when I was trying to get my diagnosis, I also dealt with a psychologist who claimed to understand and have experience with autism, but she didn't even know that lack of eye contact was a 'symptom' for lack of a better word, of autism!! She only saw it as an anxiety thing! ... Of course, she also claimed to be fine with reading what I wrote, and then refused, saying she preferred (understatement) to only discuss things in person, through speech. She's also the one who initially claimed that it would be no problem not being able to speak to my mother about my early development, and then three appointments later said she'd be unable to diagnose me without talking to mom!! (long story, but mom was of the 'you can't be disabled, you must be perfectly normal and not experience - well, any, really - difficult emotions' mindset)

Oh yes, and this same 'professional' also was unable to tell when I was spaced out, or that it was a common autism thing. She complained that even though my face was smiling while talking about having met other autistics in person (which she hadn't expected), "it's not reaching your eyes", and therefore was convinced that I couldn't possibly actually be happy!! (Now, I get that in NTs, that might be a valid conclusion, but in autistics, between spacing out, and difficulty with body language, it should've been a clue!!!)

So, moral to the story here, make sure that when you get someone who says they 'have experience with autism' or "are experienced', that it's actually true!

Edit: And it helps if they see us as people not just 'cases', or research subjects. etc. something to be fixed.

 

[zozie]

I have a close friend with borderline personality disorder. He fought hard for that diagnosis, getting dismissed over and over by doctors as just being anxious or depressed. Interestingly, he and I can both space out, both behave differently around others in a social situation, and even both have sudden changes in emotional state, but for entirely different reasons.

Seeing someone with experience diagnosing autism in human beings, as I have learned this past Wednesday, makes all the difference. Wow.