Recent autism diagnosis

Miscellaneous and Personal Stuff I Must Share
61

I find this thread interesting. Please believe me that I do not intend to threadshit. If the consensus is that everyone would prefer I stay out, I will.

Many of you describe behaviors and mindsets that I can readily identify with. I DETEST social situations like parties. Never a social butterfly. Always wanted to be bound by my words, rather than what someone told me about body language or expressions. Yeah, I’ve pissed people off by just speaking my mind, and have been accused of lacking tact. Etc. (Hell, maybe if you find my views offensive, that might establish that I’m further along the spectrum than you! ;))

But I still don’t get what you folk derive by associating yourself with terms like autism, or neuroatypical. Not the OP - who was concerned enough to get tested (the reliability of such tested - of course - being subject to question.) But personally, whether I am on the spectrum, antisocial, or just a jerk, the answer is the same. I can just engage in my less socially acceptable behaviors, I can avoid certain situations, or I can strive to change. I try all 3. And most of the behavioral exercises and modifications would work whether you are on the spectrum, or just a clueless jerk.

I have asked a counselor whether I impressed him as being on the spectrum, depressed, antisocial, etc. He doesn’t think so, but he feels in most cases labels are less important than working to improve. An approach that appeals to me.

My kid was clearly on the spectrum. Sensory integration disorder, fell alot, not crossing centerline, etc. He’s a rocket scientist who just celebrated his 5th anniverary. He said he intentionally refuses to characterize himself as on the spectrum, because he perceives many of his contemporaries using that designation as an excuse.

I especially think it curious when folk say they are somewhere on the spectrum, but also have overlay of anxiety, OCD, or something else. Well, maybe you are just weird - like just about everyone else.

Like I said, I’m not trying to offend. Mainly trying to express my somewhat different views on this topic. Yeah, maybe all of you are on the spectrum. Or maybe some of you (not all) are succumbing to the social phenomena in which people derive some benefit from membership in a community.

62

I wish there was more recognition around how neurodiverse individuals can thrive in the right work environment. My biggest weaknesses around productivity are task initiation and emotional dysregulation - getting started on something is very difficult, especially if there’s something emotional in my life that feels more urgent. I have had varying degrees of success with jobs, depending on the parameters, but sometimes outright failed because of these two weaknesses.

I guess I ultimately ended up in the right field - grants management - because it’s work that can be done remotely, and does not require a strict 9-5 schedule. I have employers who don’t care when I work as long as my work gets done, and my work has very clear productivity benchmarks - as in, dollars raised for services. My job is to help the revenue go up and to sustain the revenue we already have.

I am fantastic at this job. Even though it entails keeping track of a ton of moving pieces, deadlines, etc. for some reason my brain is a just a little obsessive about getting things done on time, I check, I recheck, I manage the calendar as meticulously as possible, I herd the cats to get the thing done. I do it all from home (most days.)

And some days, it takes me two hours to get started.

And some days, like yesterday, nothing gets done at all.

But I’ve always been skilled enough and efficient enough that when I finally do apply my ass to a chair and start the thing, I can focus without interruption for hours (also common with ADHD) and I can get excellent work done fast.

This applies to my fiction writing as well, when I’m on a writing kick, well, before I had a kid, I could write 16 hours a day with little interest in anything else, including food. Most people just can’t do that. But because of my ADHD, I can.

So I am successful at my job merely because I got lucky enough to find the rare place that respected by autonomy and didn’t apply any arbitrary expectations to my role.

If we had more respect for difference in the work environment, I think more people with disabilities would have more opportunities to thrive and be productive.

63

I don’t get what you don’t get. You keep saying that the important thing is to identify and improve behaviors. People are saying that recognizing (validly or not) their ASD is a way that helps them identify, understand and improve their behavior. That’s the value in recognizing it.

64

I can understand that. Speaking as someone on the spectrum, it bugs the crap out of me when someone behaves like an utter ass and then when called on it, says it’s not their fault, because “I’m autistic, okay?” I knew a guy who used that excuse to cover everything from not having an indoor voice to his sending of dick pics. I’m conscious of how I carry myself in public; if anything I’m horribly self-conscious and go out of my way not to make waves. If anything, those kinds of jerks give a bit of credibility to that percentage of the population that thinks it’s all a load of BS and we should all just get over it.

65

I wonder if I am on the spectrum somewhere but, at 56 years old, is there any point in knowing?

I have gotten this far in life and have my coping mechanisms and managed till now. Do I really need drugs and/or therapy or just keep on going as I have which has worked so far?

66

If anything, I’ve gotten more reserved since my realization. Trying to constantly mask in social interactions is exhausting. Being quiet and not drawing attention to my social ineptitude is not.

67

For me I needed to know so that I could understand why I behaved the way I did for 50 or 60 years of my life.

Do you have any regrets about how you behaved through your life? If you do, you might find it useful to know why these things happened.

68

“It’s an explanation, not an excuse” is how I’ve always heard it said.

69

There’s a lot of truth to that. I’ve treated a lot of people badly and I know it; there’s no excuse but, had I known I could have mitigated or even avoided the behaviour.

70

I hope you’ll allow me a brief, quasi-related aside, as I think this is good, productive conversation, but a lot of what underlies your skepticism seems affected by a deeper skepticism of any sort of mental health or neurodevelopmental thing in the first place.

It’s so weird because I both agree and disagree with you. I think there are a lot of things about the mental health/neurodevelopmental world that deserve skepticism, but I think it requires a firm grasp on understanding the nature of mental illness and neurodiversity, diagnosis and research in order to know what things to be skeptical about, whereas you seem to want to throw blanket skepticism on everything without really understanding how it all works. I hope that doesn’t come off as an attack, I’m just trying to define the disconnect.

When you question the reliability of a diagnosis - what do you mean? An assessment tool is reliable if it has been shown to produce the same results on different occasions. Most standardized assessment tools used by psychologists have been tested for reliability. They are not without their flaws, but generally they are reliable indicators that yes, there is something here, which can lead to deeper assessment. In order to receive a diagnosis, a lot of conversation has to take place to make sure what the client is experiencing matches up with the diagnostic criteria.

Are some professionals sloppy about this? Absolutely. And many eschew labels altogether, which in my opinion is unscientific and unprofessional, but that is an opinion derived from a very research-oriented approach to psychology. The irony here is that those professionals who want to shy away from labels are making the therapeutic process even more subjective than you probably already think it is.

I’ve been around, okay? I’ve been too sick to function, too sick to bathe myself regularly, too sick to eat, too sick to hold down a job, and the thing, the only thing that has ever worked for me, to get me better, is to follow the research. I’ve done CBT, cognitive therapy, prolonged exposure for heights (long story), prolonged exposure for PTSD, cognitive therapy for PTSD, ACT, EDMR, lately I’m dipping into metacognitive therapy, if there is an evidence-base, I am here for it. Over the last twenty years, I have taken these tools provided by the field of clinical psychology and used them to crawl out of that pit of despair and into a better life.

So when you say things like, “It’s all bullshit” (paraphrasing), you’re wrong. You’re extremely wrong. This research and these clinicians exist for a very good reason, because there are people out there who are so sick they don’t know how to help themselves and they need guidance. My entire life has been built on the research of clinical psychologists. I would not be here today as this healthy and whole person if it weren’t for them. I would not have a Bachelor’s degree, a Masters degree or a job if it weren’t for the field of psychology. Or my husband, for that matter.

Within the scope of your skepticism, though, is an element of truth. A mental health professional can have the best of intentions and still get it wrong, either by using an ineffective therapy that they believe in, or because due to human error they missed something big. And people can think something is helping them, when it’s actually not, by any objective measure. And people in a self-identified community can spread misinformation and reinforce weird ideas about a given condition and all sorts of things can and do go wrong. That’s the part where it makes sense to be skeptical.

I’ve just been wanting to explain this for a long time. And actually had a much lengthier explanation I spared you, so be grateful. :wink:

71

Sure. Lots. Still keep me up at night sometimes. Is this unusual?

72

It was certainly valuable to me at about the same age. It is easier to tell my wife and family that I am feeling anxious, so if I go quiet or withdraw for a bit, it isn’t them. The meds help with that too. Just knowing helps me approach new or unexpected situations.

73

I’m pretty confident that I am, both from discussions about my son, the possible genetics of it all and my own history. But I also feel a lot like you said: I assume that there’s not a whole lot new someone is likely to tell me at this stage. It’s kind of like why I don’t pay some DNA joint $125 to tell me that my ancestors are a bunch of Poles and Czechs; this is information I already have.

But I also don’t do anything with it aside from use it for self reflection and understanding (and for my wife, who came to the same conclusion about me while my son was being diagnosed). I wouldn’t try to make myself a public advocate or tell people they need to deal with my shit because I’m on the spectrum (ok, I wouldn’t do that anyway) or anything else without the benefit of a formal diagnosis. And, trust me, I ain’t confident about it so I can be quirky and unique or some shit. No one appreciates this brand of quirky.

On the other hand, I completely understand why other people would want to be tested, talk to a medical professional and all that. It’s just not a big drive for me.

74

I must be a weirdo even among other weirdos for not finding being diagnosed either positive or useful. Probably because it didn’t lead to any kind of help or advice, and because back then it was only applied to those with serious impairments who were unlikely to ever hold a job or have a relationship (and mostly boys and men, in whom it presents differently), so it didn’t really seem to fit me or help with self-understanding. Nowadays I can easily find stories I identify with online, but none of that existed back then. Also, this was back when a diagnosis would be another stick for the bullies, rather than a way to get extra sympathy and special treatment. The latter explains some of the eagerness to associate oneself with a diagnosis, and it’s hard not to feel sceptical of the self-diagnoses as a consequence.

75

Good post. I’ve enjoyed much of what you write on these topics.

I readily acknowledge that my career’s work involving disability claims has skewed my perspective, not only regarding the reliability of peoples’ presentation of their symptoms and limitations, but also regarding the motivations of medical professionals in our for-profit healthcare industry who diagnose and treat conditions with very little support. As a rule, mental health professionals do not get paid if they do not assign a diagnostic code.

As to the reliability of a diagnosis, concerning conditions lacking in objective indicia (mental health, chronic pain, migraines, etc.) I am skeptical of a diagnosis or description of severity made by someone who is not familiar with the patient over time, is not experienced in the area, has not conducted appropriate tests to support a diagnosis and rule out other possible diagnoses, and/or who lacks corroborating information. And the corroboration of a family member - who might be an interested party, should be viewed with some skepticism itself.

In my job, I review thousands of pages of medical records every day, and listen to hours of testimony per week. No, that does not make me any sort of a medical expert. I also read quite a bit on health and medical matters - the last book I finished was on neuroscience. But after 37 years of doing this job, trying to figure out who is incapable of working, and who is just trying to get attention, validation, and a check, is incredibly hard. Some people seem to suggest that if someone claims they experience certain limitations, their claims simply should be accepted at face value. Well, That would sure make my job easier - in fact, it would put me out of a job! :smiley:

Final disjointed thoughts. I guess I think most people are a lot tougher than they let on, and are capable of a lot more than they claim. I think life can be pretty challenging for just about everyone, and the extent to which someone takes care of things reflects their character (imprecise word but I don’t know a better.) And I feel subjective allegations play far too significant of a part in too many medical diagnoses. I do not believe it is coincidental that disability claims increased when welfare was reduced/eliminated.

But thanks again for your post(s). Mine is simply intended to respond to your questions, and is not intended to criticize any other specific individual.

76

That’s an individual call.

My grandfather is eighty-some years old. He would describe himself as content. I’ve certainly never heard him complain about anything. But he’s had violent meltdowns as long as anyone in our family can remember. It often resulted in domestic violence. His second wife told him, “just go do that in the garage” so he did. Flinging tools everywhere, cursing up a storm. If he feeds his cats twenty minutes late, he has a meltdown. Everything has to go exactly how he wants it or he completely loses it.

In all other respects he is highly functioning. He has no friends, never wanted any, was very successful in his job anyway, required no support from anyone.

When we talked to him about our concerns with our son, he said, “What’s the matter with that? I was the exact same way.”

We laugh, but I can’t help but think if he’d received intervention earlier in life it would have prevented a lot of traumatized people. He never would have wanted a label, either.

If you’re not beating people up or having screaming meltdowns, you have supportive people in your life and you’re content, I don’t see why it’s necessary. But I’ve seen what happens when people don’t get the reality check they need, and it ain’t pretty.

77

Having a diagnosis in itself does not fix anything. The support your son is getting sounds great, and like it’s really helping him. But the same thing does not really exist for 56, or 80 year olds, and there’s no medications like for ADHD.

78

I have had meltdowns but they are very rare (like once every ten years or more).

It does shock those close to me if they see it because they never see it…then there it is.

But again, is having a very rare meltdown so unusual? Have you never had a moment where you just lose your mind/temper for a few minutes?

To be clear…I have never hurt anyone/anything in those moments (not physically…I have said some mean things though). Broke a glass once…that’s as bad as it got. Well…the mean things said might have been bad.

I guess I am asking what “normal” people do? Do they never have a fit? Do they never lash out?

79

I honestly don’t know. My mother had an insane raging temper much like my grandfather so property destruction and violent threats as the default means of expressing anger is all I have ever had modeled for me.

I have struggled with anger my entire life (just the guilt of having it) because of my upbringing and tried to never ever lose my temper but I am not always successful. I have never done anything like my Mom or anything, but I have no idea what’s normal. I had to work with a parenting therapist to even understand that it’s normal to be mad at your kids sometimes.

I’m not a great person to ask.

80

Perfect person.

I do not feel as “wrong” as I did before. I’m not the only one.

Thanks!