I am very skeptical of my ASD diagnosis and ASD in general

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quackslikeadoug
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14 May 2022, 11:28 pm

Apparently, when I was very young (I remember the office visit, I was just too young to understand what it was about. Sometime between the ages of 3 and 5), my mother took me to a therapist or some other person who wasn't qualified to officially diagnose me, and that person told her I had Asperger's.

Fast forward about 8-10 years, and my dad snaps and finally tells me I don't actually have autism. At this point, I'd lived through almost my entire childhood being treated as if there was something innately wrong with me, and believing it, so the development of my social skills and self control had been stunted regardless of whether that "diagnosis" held any merit.

After that revelation and several related epiphanies, I began to grow out of many of my "symptoms" very rapidly. In high school, after reading the DSM-5 and realizing that ASD is effectively not a "real" disorder (in the sense that autism has no fundamental symptoms or causes, and that the "spectrum" is simply a convenient excuse for the APA's practice of deprecating any and every diagnosis with halfway decent diagnostic criteria), I became more and more disillusioned by academia and the medical industry.

Some time after that point, towards the end of my Sophomore year, I threatened to rat my mom out for medicating me (for most of my life, methylphenidate, which I hated every waking moment of) without a diagnosis. Her response was to take me to a hospital in the city for a "proper" diagnosis. They gave me the same test they'd give to a toddler, took testimonies from my mother and a teacher of her choice, and slapped the ASD label on me that day. My mother put me on amphetamine salts the next week, and I reacted awfully to it.

The only recurring symptoms I still deal with are hard to describe. I generally call this a minor speech aphasia, but I don't really "think in English": I think faster than I process the language attached to the information, and as such I very frequently forget words as I'm speaking. Since I've already planned the syntax and flow of the next few sentences by the time I hit a snag, this issue is catastrophic for my train of thought and verbal communication in general. This is only pronounced in verbal communication; in typing, I believe, the ability to read what I'm saying before I say it effectively counteracts the issue. Perhaps this is simply a result of much of my social exposure being over a screen, but since I don't know any other members of Gen Z who have this issue, I'm doubtful.

Other "symptoms" include aphantasia and general social awkwardness, but any of these things can be explained by childhood trauma/undersocialization.

Now, probably my biggest point of concern is this: why is it that there seems to be absolutely NO research or discussion involving treating ASD, ADHD, or any related disorders with CNS depressants? The go-to medications are effectively meth, two very strong and addictive stimulants. This is in spite of countless testimonies from patients about the treatment being worse than the disease. Logically, if someone is experiencing symptoms associated with hyperactivity and/or anxiety, a stimulant should be the LAST thing you prescribe. And, at least anecdotally, I find that I'm relatively normal after a few drinks; I'm able to do just about everything more fluidly and casually after two glasses of whiskey or an edible. Not that I'd risk driving or becoming an alcoholic, I don't drink frequently, but the point stands: why are stimulants the prescription for people whose primary complaints all chalk up to "I think too fast", and not CNS depressants?



Pteranomom
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15 May 2022, 1:15 am

Hello Quacks.
IMO, the field of psychology/psychiatry is very much in its infancy. Give it a hundred years and we may see better results. I do not like how autism is defined in the DSM: first, the definition is way too broad -- it doesn't seem at all useful to lump people who can talk with one's who can't -- and second, there's no consideration of causes, only symptoms. A cold and the flu both have similar symptoms, but they are nonetheless different conditions because they are caused by different viruses.

That said, the diagnosis exists for a reason; it does describe some portion of the population well enough to be useful.

As for why adderal and it's ilk work on hyperactive kids, that's a pharmacological question probably better answered by Google than by me, but my understanding is that it relieves boredom.



MrsPeel
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15 May 2022, 1:28 am

Well, I don't believe stimulants are usually prescribed for ASD. They are prescribed for ADHD, though. And sometimes there can be diagnostic confusion between ASD and ADHD which leads to the wrong medication being prescribed, which possibly might have occurred in your case?

With ADHD the brain is actually under-stimulated, and the hyperactive and impulsive behaviour stems from the brain trying to keep aroused enough to function. Stimulants have a paradoxical calming effect on people with ADHD by helping them maintain an appropriate degree of stimulation to be able to concentrate on tasks and see them through.

If you have ASD without ADHD though, there would be no call for using stimulants. And I agree stimulants can be bad for people with ASD who are prone to agitation or anxiety, and something with a calming effect might be better. I don't know why such medication has not been developed, though it might be becasue some calming meds like benzodiazepenes are addictive, so can;t be prescribed long-term.

If you have both conditions though, it gets a bit complicated. You might need to trial some meds to see what works best.

Whatever your diagnosis, I'm shocked that you've been given stimulants against your will, as I believe everyone should have a say into what medication they take. It's your body!



laevateinn
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15 May 2022, 10:35 am

I agree with you in the sense that ASD is a very vague disorder and that it should be (much) stricter defined to avoid misdiagnosis and misinformation (such as bringing back the developmental delay criteria which lent it at least some objectivity), but I'd be careful in saying that autism is not a "real" disorder. I know what you mean, but others might take offense to that.

On paper, stimulants should never be used to treat autism unless the individual also has a diagnosis of ADHD. Ironically, antipsychotics are used more often to treat autism (albeit not very often), and from what I can tell those are CNS depressants. They seem to basically be used to control behaviors the psychiatrist views as a "problem", though; I've only been on them for reasons other than autism and while, yes, they do slow down your thought processing, they do so to an extent that basically zombifies you. Factor in side effects such as weight gain and tardive dyskinesia, and it becomes pretty obvious why they aren't more widely used in children.

(This is not to say that stimulants don't have side effects either. ADHD med side effects in my experience are almost as bad precisely because they make me more wound up.)



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15 May 2022, 10:38 am

laevateinn wrote:
I agree with you in the sense that ASD is a very vague disorder and that it should be (much) stricter defined to avoid misdiagnosis and misinformation (such as bringing back the developmental delay criteria which lent it at least some objectivity), but I'd be careful in saying that autism is not a "real" disorder. I know what you mean, but others might take offense to that.


We can also argue that the diagnosis being too specific leaves too many excluded. It's not a disease, which requires a very specific definition. It's a way of being. Otherwise, we may as well say homosexual men only like certain kinds of men, if they are truly homosexual.



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15 May 2022, 11:42 am

I was diagnosed at age 64. And parts of the assessment process were clearly designed to assess young children...but it appeared to me they would likely be just as useful in assessing me (though I found the process amusing and kind of fun).

Obviously you can't get a formal assessment on WP. But there are a couple of online quizzes you might find interesting if you have not already found them. They can't give you an actual assessment, either, but could perhaps provide additional viewpoints.
<=>- Autism-Spectrum Quotient Test
<=>- Aspie Quiz Registering is optional!


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laevateinn
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15 May 2022, 12:13 pm

Several questions on the "Aspie quiz" have nothing to do with autism, and many of them can be applied to neurotypicals:

"Do you have odd hair (for example multiple whorls, standing up when short or other peculiarities)?"

"Do you have unusual sexual preferences?"

"Do you have an alternative view of what is attractive in the opposite sex?"

"Do you usually find faults with others' opinions that you don't share?"
(Don't most people?)

"Have people you formed strong attachments to taken advantage of you?"

"Have your thoughts ever been so vivid that you were worried other people would hear them?"

"Are you sometimes afraid in safe situations?"

"Do you feel as if you are being persecuted in some way?"

etc.


Answering all of the above questions as "yes" results in a perfect score of 200 "aspie" points and 0 nt points. The DSM isn't perfect, but neither is an online quiz.



Pteranomom
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15 May 2022, 12:24 pm

Those are pretty bad questions.



jimmy m
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15 May 2022, 12:29 pm

I read your post and I am very confused by what you wrote.

First of all, you talked about having aphasia. I suffered a massive stroke about a year ago and it destroyed about 2 percent of my brain cells. I lost a portion of my memory. It is gone forever. I was able to work hard and restore most of the rest of my memory back. But most people do not and many with aphasia do not even speak or get their former lives back.

I generally call this a minor speech aphasia, but I don't really "think in English": I think faster than I process the language attached to the information, and as such I very frequently forget words as I'm speaking. Since I've already planned the syntax and flow of the next few sentences by the time I hit a snag, this issue is catastrophic for my train of thought and verbal communication in general.

I would probably describe this differently. You have a very, very short term memory problems. I do not think it is aphasia. In aphasia after my heart attack, I lost around 99 percent of my words. They just disappeared from my brain. I was left with a few words such as Supercalifragilisticexpialidocious from the movie Mary Poppins. It survived but all the common words such as cat and dog disappeared. It doesn't sound like you lost your knowledge of words.

Having a very, very short term memory can produce its own set of problems. It makes communications difficult especially when you are trying to get your point across.

Then you mentioned Other "symptoms" include aphantasia

Aphantasia is a phenomenon in which people are unable to visualize imagery. While most people are able to conjure an image of a scene or face in their minds, people with aphantasia cannot.

Imagine that it is a warm summer day and you are sitting on the side of a swimming pool. The sun is shining down and there are children laughing and splashing in the water. What sort of images do you see in your mind as you think about this scene?

If you are like the estimated 1—3% of the population with aphantasia, you may be unable to visualize any type of image in your head.


I do not take any drugs for having Asperger's Syndrome (ASD) and never had. For me it is more like seeing life through a different lens. It provides me the ability to see life differently with greater accuracy and clarity.

So from my view, I would be cautious about taking whiskey or an edible as a type of magical cure. I never took a Methylphenidate (a central nervous system stimulant. It affects chemicals in the brain and nerves that contribute to hyperactivity and impulse control). Nor have I taken amphetamine salts.


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techstepgenr8tion
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15 May 2022, 5:18 pm

I actually got the opposite treatment that you did - ie. not methylphenidate but antipsychotics, so I had the joy of full-body akasthesia from 6th grade thru the end of my senior year in high school and a bit beyond (got off the meds at age 19, much to my parent's concern, but did fine). My case is that I was dx'd back in 1991, my parents were almost hypochondriacs on my behalf, found all sorts of things the psychiatrists said that slotted in (throat-clearing, for example, was taken as a sign of Tourette's), and since Tourette's was thought to be best solve by Haldol and the idea at the time was that ASD responded well to antipsychotics - that's what I got put on. I was on Haldol for a year and a half, it was switched to Risperdal for the duration and at the same time I'd typically be on an SSRI and an anti-anxiety, to which I have to say that I've learned that I don't do well with SSRI's at all, almost all of them cause identity and personality loss almost immediately, fastest onset for that was Effexor, the one I tolerated best before reverse tolerance set in was Celexa.

I also learned, through playing with enough nootropics, that eight years on antipsychotics put a divot in my hypothalamic dopamine levels - so I did then have to go on time-released Ritalin for a while to pop that back out, after which maybe nine or ten months later the side-effects got too high and I was off of that as well. Had tried Wellbutrin at one point, as a light smoker, tripled my smoking and was miserable. The only medication that worked out well for me consistently, when I needed it, was Neurontin / Gabapentin for when I'd feel - for some reason in spring time when I was in college - like my nerves were almost popping out of my skin and like my veins were full of dirty motor oil (not sure what that was analogous to but my body was trying to tell me something).

Another big discovery I had in my early 20's that made a huge difference - figuring out that I'm allergic to NutraSweet (aspartame), acesulfame potassium, and really just about any diet sweetener that wasn't saccharine. My parents always had diet soda round the house, I was probably always drinking it, and I noticed that once I removed diet sweeteners from my diet a lot of the worst fog cleared, and in addition there were a few times in my late 20's or early 30's where I'd buy a can of No Fear or something like that, see that it was 230 calories per can, assumed that I was in the clear, was driving across the state to go do an audit with a coworker, and halfway through the trip I'd go pale, start sweating, and start doing the Scooby Doo the morning after a night of railing coke thing in terms of my speech. I checked the can and sure enough - 230 calories per serving, and - still had to throw in aspartame just for fun.


To get through all of that I really had to get to know my body, and on top of that on the cultural level had to really learn to navigate constant gas-lighting.


As far as what ASD is - it really seems to be a basket of assorted goods and I don't think they're all the same thing. Back before 2005 when I joined here I was on a Delphi forum called Aspie Hangout, met a lady from Canada over there who seemed to have a similar build to her ASD, and we compared notes. It seemed like both of us had (at least as far as we could tell) relatively normal ways of thinking, reading other people, where we kind of felt - at least in our own minds - very 'NT' but that our nervous systems would go slack, we'd go into this sort of docile mode when too much stimulus was hitting us, it's like a milder version of what hit's LFA's in terms of not having great control over their nervous systems, and so we started getting the impression that at least with HFA and Asperger's there were two different things going on - one was just a much milder version of LFA (ie. us) and the Little Professor syndrome was less so. I will admit that when I was eight I had astronomical charts on my walls, was really fascinated by space, gem stones, almost anything science or art related, and that was seen as abnormal in this direction - I suppose but then... are we just lumping kids who aren't game-theoretically interested strictly in 'fitting in' or climbing social hierarchies through shared interests and sports as on the spectrum?

It'll be interesting to see what happens to the ASD label as they get under it more genetically or even start figuring out if there's a nexus between epigenetics and methylation and various DSM categories or, probably even harder to deal with, something like Michael Levin's bioelectric software layer and how all of that affects things. Seems like some of these lacunas should be sorted out by scrutiny but I have to agree that the ASD diagnosis is pretty much 'if it looks like x, it's x', and it's awfully hard to tell whether it's really a disability in many cases or whether the so-called disability is none other than simply not being NT and thus the funhouse mirror reflects us crooked.


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carlos55
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16 May 2022, 2:28 pm

There is no such thing as ASD as a single isolated condition that can be seen under a microscope or blood test.

ASD itself is just an old 1940s name of a group of symptoms science can only explain in about 20% of cases where there is a clear genetic cause.

It’s so heterogeneous that treating it individually may be possible in some cases but doing so takes too much time and resources and brain biology is just not there yet.

It’s easier and cheaper for authorities to just dump us in a corner and forget about us or keep us busy with identity politics and inspiration porn.


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16 May 2022, 5:51 pm

carlos55 wrote:
It’s so heterogeneous that treating it individually may be possible in some cases but doing so takes too much time and resources and brain biology is just not there yet.

It’s easier and cheaper for authorities to just dump us in a corner and forget about us or keep us busy with identity politics and inspiration porn.


This is silly. It takes no more time and effort to indivually treat an autistic person than to individually treat people with cancer or heart disease, which they do all the time, by the millions.

Furthermore, someone who has been successfully helped to the point where they can hold down a job and become a taxpayer is much "cheaper" for the gov't than someone who requires lifelong care.

That doesn't mean that society will, but the culprit is ignorance of how to do it.