Assessment Results Are In! Spoiler: It's (apparently) Not Autism

[Tom]

I don't read much on autism. No books by autistics or articles by doctors. Except to get some basic facts, the criteria they use, statistics etc. But I do read everything that comes out as scientific studies on autism I can find.

I think the understanding of autism until recently was primarily based on observations on symptoms. But as time progressed many realized the symptoms were a lot more varied and confusing then first realized, hence the term spectrum. Diagnosis therefore can be very difficult.

They are on the outside trying to figure out what is going on, on the inside. It can be very subjective. Some professionals are so inept that I think you have as much chance of getting an accurate diagnosis by going to someone who reads tea leaves. So I tend to give more weight to what is being learned about it from the inside out.

As best I understand it, about 100 gene variations/mutations have been identified as prevelent in autism. They group quite distinctly in two specific areas of a key section of the genome. One is I beleive mostly related to developmental issues (ie. Speech, Coord, etc) and the other to brain development/building instructions that affects our thinking processes. I believe many people (including many if not most NTs) have a couple of the variations, some have a bunch and some many. It depends upon how many of them and in which areas they are that determines the sort of symptoms and conditions a person will experience. With 100 variables the ammount of possible combinations is astronomical. If you have only a few it will probably not be recognized as autism. The more you have the more likely symptoms will show. For reasons so technical I can't follow it, they also found something within the structure or chemical processes of DNA or genes of females is more resiliant and tripping points are higher. This aspect really was confusing but meant something like it took more variations for females to become symptomatic.

Not written in stone by far, but what the most recent work on our DNA/Genes is suggesting to to researchers.

 

[Finder]

The "problem" with autism is it was always defined by behavior. The problem is the social communication deficit, sensory issues, and repetitive behavior that defines autism are all independent--having one, does not mean you will have the others, and thus, not autism.

While biology is psychology, simply having certain genes does not lead to a particular behavioral outcome. But behavior is neither cognition nor biology. Since autism is a cognitive deficit, but is defined by behavior. But cognition does not lead to a particular behavior either.

The best thing that can be said about autism is that it is an emergent behavior that has its roots in biology and cognition. However, you can have many different ways those are expressed in an individual, but only some l lead to the behavior recognized as autistic.

 

[zozie]

Wonderful news I’m happy for you, you’ve dodged a bullet there! I wish I’d had the same result, or at least been assessed not to have ASD, but sadly and unfortunately that wasn’t the case. Good luck in whatever treatment/therapy you are offered I hope it helps you with whatever trauma you’ve been through.

As for remaining here without having a diagnosis, I don’t see any reason why you shouldn’t be welcomed to continue as you have been. At least you’ve been through the diagnostic process now, and you’re certainly far from being the only person involved in the forum not have ASD.

Thank you for the welcome. I will continue to self-identify (not self-diagnose) as autistic until I find something that makes better sense. I hope this is okay, and mean no offense to any of the diagnosed voices here.

 

[zozie]

I don't read much on autism. No books by autistics or articles by doctors. Except to get some basic facts, the criteria they use, statistics etc. But I do read everything that comes out as scientific studies on autism I can find.

I think the understanding of autism until recently was primarily based on observations on symptoms. But as time progressed many realized the symptoms were a lot more varied and confusing then first realized, hence the term spectrum. Diagnosis therefore can be very difficult.

They are on the outside trying to figure out what is going on, on the inside. It can be very subjective. Some professionals are so inept that I think you have as much chance of getting an accurate diagnosis by going to someone who reads tea leaves. So I tend to give more weight to what is being learned about it from the inside out.

As best I understand it, about 100 gene variations/mutations have been identified as prevelent in autism. They group quite distinctly in two specific areas of a key section of the genome. One is I beleive mostly related to developmental issues (ie. Speech, Coord, etc) and the other to brain development/building instructions that affects our thinking processes. I believe many people (including many if not most NTs) have a couple of the variations, some have a bunch and some many. It depends upon how many of them and in which areas they are that determines the sort of symptoms and conditions a person will experience. With 100 variables the ammount of possible combinations is astronomical. If you have only a few it will probably not be recognized as autism. The more you have the more likely symptoms will show. For reasons so technical I can't follow it, they also found something within the structure or chemical processes of DNA or genes of females is more resiliant and tripping points are higher. This aspect really was confusing but meant something like it took more variations for females to become symptomatic.

Not written in stone by far, but what the most recent work on our DNA/Genes is suggesting to to researchers.

I am a fan of how research is unfolding beyond behavior and into neuro-biology. I hope it brings more understanding to the causes, challenges, and strengths of a spectrum brain. I remember when I read that a traumatized brain has no activity in the creativity center and it was a real watershed moment for me. Granted, I am still terrible at writing stories, but it helped me understand a stress response a lot better.

 

[zozie]

I got an OCD diagnosis officially, and I too feel like I need to "twist" my experiences in order to "fit" the diagnosis (if I WANT too, which I don't. Screw it. Why would I want to make myself fit a diagnosis?)

It really sounds like the "control issues" bit of your diagnosis could do a lot of harm, tread carefully (which it sounds like you already are).

Yes, exactly. The "twisting" part is what feels so not-quite-right. As for what is right, well, I'm setting that aside for now and just looking for what works for me. Hence the "alien" metaphor.

And the control issues...that really hurt my feelings when I heard it. I thought about my academic work in philosophy, where you must separate your convictions from your ideas and allow the ideas to be challenged while understanding that it's not a personal attack. And also, learn how to not do that to others whose ideas you're critiquing. But I've never been much for wanting to take over an idea or a conversation. Dialogue, yes. Very much so. Monologuing at people...it's not my style and if I catch myself doing it, I know it's time to check inward at what's got me nervous.

The skills one develops by having their ideas and even morality dissected and critiqued in the classroom, however, provided very good practice for my diagnosis conversation. I could feel myself being "twisted" and was very glad to be able to calmly disagree. Even so, such a thing must be done with care, as you say. I feel most at peace when I feel no ill will towards any person, just recognize and plainly state when something doesn't fit for me.

Bit of black humor, too, given the prognosis of OCPD, which is poor because so many with the disorder refuse to admit that they have it. So I can chuckle darkly at the corner I've been painted into, and use compassion as a tool to find personal peace.

 

[Yeshuasdaughter]

Doctors don't know anything. Yes they have great educations, and are helpful when you really need them. But there's a reason they "practice" medicine. Just because they say you don't have it, doesn't mean it's true. Especially when it involves female autism, which is very different from male autism. Get a second opinion.

 

[Crossbreed]

Do you trust their answer? Does their shoe fit?
Do they strike you as autism competent; that they would acknowledge ASD1 and not just ASD2/3 (which are inescapably obvious)?

I used metaphor, for example, and figures of speech, which autistic people apparently cannot do,...

Not true. Twice-exceptionals get misdiagnosed all of the time with OCD being a common misdiagnosis of ASD perseveration.

Perseveration accepts closure.
OCD maintains a ritual (even when closure is granted).

If the shoe fits, go for it.

If you think that they reject a diagnosis of ASD1 (with its minimal comorbids) seek out a second opinion from an autism-competent therapist. (They won't give you a false positive.)

 

[zozie]

Perseveration accepts closure.
OCD maintains a ritual (even when closure is granted).

If the shoe fits, go for it.

If you think that they reject a diagnosis of ASD1 (with its minimal comorbids) seek out a second opinion from an autism-competent therapist. (They won't give you a false positive.)

Oh interesting. I wonder if my tendency to research is perseveration. I'm looking for an answer and when I find it, that's it. But until I find it, I keep looking. The "ritual" of researching (the primary "obsessive-compulsive personality" component that was explained to me) does not continue beyond an answer that fits.

OCPD appears to be different than OCD, though. The rigidity is in the worldview, the personality itself, not necessarily in the physical actions. So if I say, "I disagree with you and here's why according to my research," that's apparently pathological. I was told that researching a topic to understand myself, and then disagreeing with the doc, was a classic OCPD symptom.

The doctor was a PsyD who is certified in administering the ADOS-2. I guess that means an autism expert? I don't know, she had 4 years of testing under her belt and appeared to be in her late 20s (but hard to tell with face masks on). And the referral to a sensory processing evaluation was for a pediatric clinic, so maybe she's got more experience with children.

As for OCPD "fitting", I would say no. But perhaps yes when I'm in the throes of a trauma response, which would negate the "stable over time" DSM requirement for a personality disorder. So I guess... no.

 

[Crossbreed]

So I guess... no.

If you are in the US, the organizations in the following link can help you to locate an autism-competent provider. (Even if such doesn't affirm autism, you can see if they arrive at the same diagnosis independently. )

Autlanders, Thriving Outside of the Box: Finding Support Resources in the USA...

 

[zozie]

If you are in the US, the organizations in the following link can help you to locate an autism-competent provider. (Even if such doesn't affirm autism, you can see if they arrive at the same diagnosis independently. )

Autlanders, Thriving Outside of the Box: Finding Support Resources in the USA...

Thank you. And yes, I am open to that possibility. If that happens, I will indeed be taking a much closer look at the feedback.

 

[Yeshuasdaughter]

I use metaphors and figures of speech all the time, and I am so disabled from autism that I get SSI. I probably use figures of speech more than actual words.

Is the doctor an ignoramus? If the shoe fits... lol

 

[VictorR]

The doctor was a PsyD

This is a PsyDuck

 

[Au Naturel]

It does not matter what a diagnoses says if it conflicts with what you experience. Realty trumps a 2nd party opinion.

Autism is not a distinct binary state. Saying this guy is autistic but that one who is slightly different is not comes down to a matter of opinion. A spectrum does not have a discrete point of color change. The point at which you start to apply a different label is an artificial construct. It separates two infinitesimally different colors with completely different labels.

 

[Thinx]

OCPD appears to be different than OCD, though. The rigidity is in the worldview, the personality itself, not necessarily in the physical actions. So if I say, "I disagree with you and here's why according to my research," that's apparently pathological. I was told that researching a topic to understand myself, and then disagreeing with the doc, was a classic OCPD symptom.

The doctor was a PsyD who is certified in administering the ADOS-2. I guess that means an autism expert? I don't know, she had 4 years of testing under her belt and appeared to be in her late 20s (but hard to tell with face masks on). And the referral to a sensory processing evaluation was for a pediatric clinic, so maybe she's got more experience with children.

I wonder if most of her 4 years have been spent diagnosing children who don't talk back? And faced with enquiring adults, she produces this booby trap of a diagnosis. If you disagree, that proves you have it! It's reminiscent of the way they established who was a witch, ducking them in ponds, if you drowned that meant you were innocent....

 

[zozie]

I wonder if most of her 4 years have been spent diagnosing children who don't talk back? And faced with enquiring adults, she produces this booby trap of a diagnosis. If you disagree, that proves you have it! It's reminiscent of the way they established who was a witch, ducking them in ponds, if you drowned that meant you were innocent....

Well I'll tell you what, this whole alien metaphor has me feeling so relaxed I find I don't care. Not right now, anyway. I'm even moving differently in my body. Don't get me wrong, the lights and the sound are still tough, but I'm not so massively highly strung from the inside. Do look a bit weird from the outside, though.

I wonder if extraterrestrials float...

 

[SDRSpark]

I wonder if most of her 4 years have been spent diagnosing children who don't talk back? And faced with enquiring adults, she produces this booby trap of a diagnosis. If you disagree, that proves you have it! It's reminiscent of the way they established who was a witch, ducking them in ponds, if you drowned that meant you were innocent....

Sadly I get the feeling that a LOT of mental health diagnoses come from such nonsense... some doctors REALLY don't like it when you question them!

 

[Thinx]

I looked up Acceptance and Commitment Therapy, it looks as if it can be useful. The problem with therapy though is that often it's offered as if there's no such thing as neurodiversity, or processing differences, and looking back I can see where that was often a difficulty for me, despite that at the time I couldn't work out what was missing, as I didn't know about autism or processing delays and differences myself then.

At least despite the absence of the autism diagnosis, they're aware of and looking at your processing issues, as these are likely to make your ability to use the therapy offered differ from the way others may use or respond to it. Wonder how joined up that will be? There's nothing wrong with being your own expert on that, but my concern here would be whether this particular provider acknowledges the expertise of the client on their own experience, given the way this has been undermined by the diagnosis offered. Obviously I don't know you well, but you don't come over here as unwilling to work on yourself. Rather the opposite.

 

[Deepthought]

I used metaphor, for example, and figures of speech, which autistic people apparently cannot do, and that I should really look into Acceptance and Commitment Therapy to make peace with my apparent control demons.

It is more the case that most people on spectrum have difficulties 'at first' relating with metaphor or figures of speech, but once their contextual relationships have been explained or researched ~ metaphors can be used by some just as effectively as people not on the spectrum.

The more literal a person on the spectrum is though; the less inclined they may be to use metaphor or figures of speech.

I am though myself very literal in my primary interpretation of spoken and written statements, and have to interpret everything again through a subjective filter after having been objectively registered.

And just as Tom stated:

I use both all the time, and in fact at times was known as being very good at metaphors.

I am also often complimented regarding the metaphors I use and also the analogies I come up with, which in terms of being idiosyncratic were commented upon in my diagnostic report as being indicative of having ASD.

I think as such in respect of metaphors and figures of speech ~ that your assessor was using childhood diagnostic criteria rather than as such adult criteria, where social camouflaging and personal masking have to be considered in terms of socially fostered and personally adopted behaviourisms.

One autistic person for instance that I read about once in a social care paper could understand what to say, write and do to an extent with others ~ which involves understanding, but they had no comprehension at all of what was actually being meant, implied or anything. It was just a case for them that particular words and sentences went along with particular objects and courses of action, and they had just learnt to behave accordingly.

Another example of which was a person I actually met who had a photographic memory and could recount every verse in a particular bible. You just had to state any book and verse number and they would repeat it. When I am asked them questions about the bible verses themselves, it soon became apparent they did not have a clue about what any of them meant, and they had essentially been taken from one religious venue to the next very happily astounding people with their photographic memory. A prime example of Savant Syndrome.

Obviously these two examples are extremes of limited ability, but I have asked for explanations about metaphors so very many times, and more often than not had to research their specific etymological origins myself (much to my pleasure), as many just used metaphors on account of others having done so in similar situations before.

(If you have not already, maybe have a read of ~ Putting On My Best Normal: Social Camouflaging In Adults With Autism Spectrum Conditions)
.

 

[zozie]

I looked up Acceptance and Commitment Therapy, it looks as if it can be useful. The problem with therapy though is that often it's offered as if there's no such thing as neurodiversity, or processing differences, and looking back I can see where that was often a difficulty for me, despite that at the time I couldn't work out what was missing, as I didn't know about autism or processing delays and differences myself then.

At least despite the absence of the autism diagnosis, they're aware of and looking at your processing issues, as these are likely to make your ability to use the therapy offered differ from the way others may use or respond to it. Wonder how joined up that will be? There's nothing wrong with being your own expert on that, but my concern here would be whether this particular provider acknowledges the expertise of the client on their own experience, given the way this has been undermined by the diagnosis offered. Obviously I don't know you well, but you don't come over here as unwilling to work on yourself. Rather the opposite.

It's been an interesting few days, I'll say that much. I've found this "proverbial alien" space in my mind, which I've used to connect with my body. The assessor was right about me being tense. After 3+ years of body-focused trauma therapy, then, the next step is to take that body to a place it feels it can move freely and then let it do so.

I cannot tell you how much better I feel just allowing myself to rock and sway. I've let go of diagnostic language at this point and just joke that I'm just landed on the wrong planet, but I hardly care about what doctors are going to say, because of how much more fluid I feel in comparison. My neck, in particular, which has always been a source of stiffness and pain, has loosened as I've allowed this sway/rock/loose neck sort of movement.

On the flip side, I did an experiment where I went again to my mental happy place and asked my body to stop swaying, just to see what would happen. I guessed that there'd be no change, but in fact, it felt like a fuse had been lit internally and that there was a bomb attached to it. May be a long fuse, but the bomb was most definitely there. What extremely valuable information! Merely keeping my body still is enough to set me on edge, and the bombs explode internally so no one sees.

I posit that this fuse-bomb cycle has been my previous baseline, and stepping out of that has been extraordinary.

Also, on the flip side, my ears are much more sensitive to contrasting noises. Multiple people talking, grocery store ambiance, etc. I suppose all of me is more sensitive, as I am relaxed enough to flinch at a smaller irritation, instead of flinch when I'm already inwardly clenched.

All of this may get put under the "pathological" and "it's all in your head" view of cognitive therapy, as it does assume, as state above, that neurotypical brains are what are being looked at. Which is really a shame because ND folks have thinking errors, too, such as a sense of worthlessness when they're not able to fit into a "normal" crowd. But the resolution is different. There's so much healing in accepting one's difference as nothing to be fixed. Not, for example, on accepting that one somehow consciously insists on being "broken".

In the end, I'm not sure I'll actually have to adhere to the recommendation of the assessor. If I'm in a therapy that works now (Internal Family Systems -- it's amazing), then my Voc Rehab counselor is going to find no reason to change.

And thank you, @Thinx , for the compliment about me being open to working on myself. It's true, and I do, and I'm happy that others see it.

 

[SDRSpark]

All of this may get put under the "pathological" and "it's all in your head" view of cognitive therapy, as it does assume, as state above, that neurotypical brains are what are being looked at. Which is really a shame because ND folks have thinking errors, too, such as a sense of worthlessness when they're not able to fit into a "normal" crowd. But the resolution is different. There's so much healing in accepting one's difference as nothing to be fixed. Not, for example, on accepting that one somehow consciously insists on being "broken".

There's definitely a lot of healing in realizing that it's not something that can/should be fixed. Before you really internalize that the difference is in the physical properties of your brain, there's a tendency to blame yourself for it. Once you realize that you're not doing life wrong, as it were, it becomes a lot easy to forgive yourself and make peace with past errors (and learn a way forward that's actually effective).

CBT seems to be the default treatment but it flat out doesn't work for a lot of neurodivergent people, leading to a lot of frustration.

In the end, I'm not sure I'll actually have to adhere to the recommendation of the assessor. If I'm in a therapy that works now (Internal Family Systems -- it's amazing), then my Voc Rehab counselor is going to find no reason to change.

I certainly hope they wouldn't make you stop doing something that's effective and switch to something possibly less effective (but I don't have a lot of faith in "the system" to not consistently do the wrong thing, unfortunately).