For the Neurodivergent Folks

Miscellaneous and Personal Stuff I Must Share
121

HUH. I took the RAADS-R and got a 79 (eh, “borderline autistic” but could go either way – which is about what I would have expected). Then I took the CAT-Q and got a 136 (with a 56 compensation, 45 masking, and 35 assimilation) – and even more than the score itself, while I was taking it I was like, “omg, yes, so much of this is exactly what I do, whoever made this test GETS it!”

Interesting though that my “assimilation” score (according to the website, “Strategies used to try to fit in with others in social situations. Examples: Putting on an act, avoiding or forcing interactions with others.”) was my one CAT-Q score that was basically at neurotypical levels. And I think that probably underlines the differences between @k9bfriender 's experiences and mine – that because I had rather more positive experiences as a child/teen with finding my people (and in the present day have been able to find communities that accept the person I am) I haven’t had to drastically change my self to fit in with others the way that k9bfriender had to. And according to the website assimiliation is the score (along with the total score) that correlates to well-being. Though my compensation score (“Strategies used to actively compensate for difficulties in social situations. Examples: copying body language and facial expressions, learning social cues from movies and books”) is definitely on the high side, unsurprisingly!

BTW, I also very much appreciate having the vocabulary of assimilation vs compensation vs masking (“Strategies used to hide autistic characteristics or portray a non-autistic persona. Examples: adjusting face and body to appear confident and/or relaxed, forcing eye contact.”) – it is really blowing my mind a little to be able to kind of sort these things out, and actually has clarified for me some of the stuff we’ve been saying in this thread. Thanks @Spice_Weasel !

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I just did both those tests and did not expect the high scores I got.

This whole thread has been fascinating because I seem to relate to much of it, and I didn’t expect to.

Things to think about.

123

I’m learning right along with you!

My scores were compensation 38, masking 51, assimilation 49 with a total 138.

Might explain why I’m so miserable right now.

I’ve been trying to identify the trigger of my shutdown yesterday (that went into today.) I think this stuff most comes out at work. I was running a meeting, which is a situation where it’s hard for me to mask. I have a new boss who doesn’t know me that well, so add that pressure. Then my CEO wanted to do something that was a terrible idea and I just sat there thinking, “I have no idea how to say this is a terrible idea without being rude.”

I couldn’t think of a single diplomatic thing to say. Then I found myself really at a loss for any words. I did manage to get the point across but it was awkward as hell. And I ended up saying something stupid (pointless complaining.)

Also in the middle of that I realized I made a huge mistake two years ago that might be discovered, coupled with a comment from CEO I took as a negative (was it?) and I got a bunch more administrative work dumped on me and by the end I was feeling completely incompetent and couldn’t hide it, so I got the hell out of there, and by the time I got home, I was useless.

Now I’m guessing I didn’t make as big of an ass of myself as I felt like. But the problem with this sort of thing is adults aren’t generally going to tell you, “hey, you’re being a weirdo.” So you have to make your best judgement without being great at judging that sort of thing.

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FYI, for the RAADS-R you may note that not a single neurotypical person in the study scored over 65. That’s why 65 is considered the threshold.

125

Okay so I just want to say I took the AQ (Autism Quotient) just for the hell of it today and there are three questions that consider enjoying fiction novels or stories to be a strike against having autism. That is just fucking ridiculous. Literally every autistic person I know loves fiction. Some of these tools are really based on outdated ideas.

126

157 points. Some questions I found difficult (not surprising); I didn’t feel that the wording lent itself to the list of answers given, but I tried my best. Unsurprisingly, the majority of my points came from the social relatedness category, at 89.

Thanks for the link!

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I just took the test. 103, with the majority (62) in social relatedness. Some questions were hard to answer: I don’t know if my voice sounds normal, for example. It’s not the kind of thing people will tell you. And I can’t always remember how I felt about things as a child. Plus, do I enjoy talking with people? Yes, but it can sometimes be so stressful and awkward that I avoid it.

Hmm. I do know a few people who say they don’t have empathy, and only help others because it’s expected and they want to remain on good terms with people around them. I think it can be a symptom of autism, just not one that everyone shares. (It’s not true of me. The issue I have is not necessarily realising when someone is upset, and not knowing how to help them when I do.)

Similarly, I think there are autistic people who genuinely prefer to be alone, and who don’t enjoy fiction, so it makes sense to include those questions in the screener. But it doesn’t rule out autism if those things are not true.

128

I am not personally of any specific label. But FWIW my wife and I definitely couldn’t disagree when our second oldest, pretty severe ADHD-combined, diagnosed very young, commented once recently: “Mom, Dad, are you surprised you have neurodivergent kids? Have you ever looked at a mirror?”

Thoughts I want to share though, and a question.

ADD and ASD are not only extremely broad spectrums with arbitrary fuzzy borders into so-called normal; they are also umbrellas. They are arbitrary labels to stuff a huge variety into for the sake of convenience. Sometimes the label is wonderful shorthand for communicating the key important facts, and sometimes it is not and a longhand description is required. Every individual however still varies and the detailed understanding of what each person’s combination of strengths and weakness are, and how best to utilize the strengths and remediate the weaknesses, is very individual based on that longhand whatever label is or is not imposed.

To me the value of the “neurodiversity” concept is NOT labeling more and more people with diagnoses of what is abnormal about them, but the exact opposite. It’s about an excessively narrow concept of “normal.” It’s about an appreciation that these differences are not all about the weaknesses annd problems associated with them but about the unique strengths associated with them as well. Diversity … divergence … among our group’s members is a strength not a problem.

Doubling back to my kid’s comment: I was definitely very divergent to other kids growing up. Did not fit in. Was bullied. And I remain convinced that such was not based on anything “wrong” with me. No label need be applied. I was not am not ASD ADD or gifted. Just a bit different. Happily a bit weird. Long term my differences have served me well though.

These comments however strike me:

and

I am very big on early childhood diagnosis and intervention. It allows for the longhand look, opens doors for individualized interventions, and access to tools based on the results of the longhand individualized assessment more than the label. It can help inform what is reasonable to be prepared for.

I am not very familiar with the toolkit opened up to adults based on these labels (other than medications for ADD).

What has been the utility of a label getting attached in adulthood? What have been the specific tools? Exactly how has it been helpful?

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I think that one of the beauties of tests like this is that it doesn’t try to be precise, and that was actually a very difficult concept for me to understand. When you take a test in school, you have to be precise. And boy, do I hate multiple choice tests. But with a test like this, you don’t have to get all of the answers correct. You just have to give the algorithm a general sense.

For me, the reason why I liked this particular test is because I have done a ton of work overcoming many of the things I struggled with as a kid. I spent a lot of time working on and developing my sense of humor, for instance. I mentioned earlier that I have video of when I was a kid. There were a couple of times where my dad told one of those jokes where you take a jab at someone in fun, and you could see that I was visibly hurt because I didn’t understand. I was in my 20s when I was able to figure out that my dad was actually a really funny guy.

I was a bit confused by the fact that it seems like they used the word “like” to mean several different things. In some cases, they used the word in a context asking if I liked to do some things out of enjoyment, and in some cases they used the word in a context that might denote necessity. I had a hard time telling the difference.

This was a bit of a curious observation. I don’t think any of the questions in the test were necessarily geared towards being absolute. Pretty much everything on the test was a tendency rather than an absolute. My personal opinion based on observations is that a lot of ASD folks suppress empathy because it is overwhelming. Because it is so overwhelming, they might not even know what it means. But at the same time, since every single ASD person I know is really in tune with animals, I have to believe the empathy is there.

I went through EMDR therapy when I was in my 30s. It turned on the empathy switch. I oftentimes wish I could turn it off. I became an empath. I wasn’t born that way, and it’s not a quality that I want to have. But there it is. I can’t turn it off. I guess it’s kind of a trade off. In order to be able to function in society, I need to be torn apart any time I witness someone experiencing certain emotions.

I was very fortunate that, at the time I was going through this, I had a boss who had an autistic child. She understood when I called and said that would be late for work because I saw someone be mean to their dog.

I scored 147.

I took another test quite a few years ago that had a bit different categorizations. I remember that “social ability” and “romantic ability” were separated. So was the “special interest” category. I scored very high on the “special interest” category and very high on the “social ability” category, and I suspect that those two items are related because social ability is my special interest. That makes a diagnosis tough, I would imagine, but an actual doctor would be in tune to other cues. The red flag is that I pretty much scored a 0 on the “romantic ability” category. My favorite was “I understand when people are flirting with me”. I don’t even understand what the word “flirt” means. When people try to explain it to me, it sounds like a terrible thing to do to someone.

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Just kind of an observation on how my sense of humor kind of started developing. I learned as a teenager that concentrating on the wrong part of a statement could be funny if done right, and I learned this from being laughed at and realizing that, in some of those situations, I was accidentally creating comedic gold. So that’s kind of a benchmark I now use for indirect humor. When someone says something that could be interpreted in more than one way, I try to figure out what was intended, and then I try to create some kind of pun or situational humor on what was not intended but what was literally said.

I had a friend in high school who I’m pretty certain was neurodivergent in more than one way, but he was also an absolute genius. I think he did this intentionally as well, and there was one really defining conversation that he had that was really a breakthrough for me.

The class bully walked up to him one day. I think he was wearing an MC Hammer shirt or something, and the bully was a metal-head. So the bully, in typical bully fashion, said “That shirt makes you look gay”.

And my friend, without missing a beat, responded by saying “you told me I looked gay yesterday, too, so I don’t think it’s the shirt.”

That simple comment opened up a whole new world for me.

131

It’s not about having a label attached, it’s about finding the help you need. Different people specialize in different areas of mental health, and having some level of categorization helps you end up with someone appropriate.

As far as tools, there’s lots of different ways of approaching things. I’ve had a lot of luck with a form of IFS therapy, helping to actually pull things out that otherwise would remain hidden. There’s a decent amount of role play that has helped me to not think about a conversation but to actually participate in it. Rather revelatory at the time. There are a lot of things that most people seem to take for granted that I never really managed to acquire.

But, honestly the biggest thing is learning to to be in a room with another person and not be hypervigilant. To not be worried about how they will judge you for what you do and say. It’s really hard to explain as it’s something that most people have experienced at some point in their life, but I had never before actually dropped my guard around others, ever felt safe to do so. It may seem odd to some, but the place where I was the most relaxed was in the dentist’s chair.

Childhood diagnosis and intervention is far preferable, of course, but if that didn’t happen, better late than never, I suppose.

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I am perhaps overly cynical having been married to a therapist for over four decades and listening to her takes on, for lack of a better phrase, “the industry” and its current state. My sense is that much (not all) of that “specialization” is less particular experience or training than marketing. The youngest and least experienced seem to be the quickest to market themselves as specialists in X or Y. They also seem to have a tendency to pathologize. Diagnosis often is not by way of validated instruments but a bit … looser.

I guess I can’t help but also be biased by my take as I treat kids with these spectrum conditions. Yes we want to use medications as needed to allow better function in the world they must exist in, and get them hooked up with appropriate therapies, to build their tools. We need labels to do that, sure. But I take great effort to also celebrate the strengths of their variations in processing styles. The creativity and humor that frequently travels with being labeled ADD for example. I am not convinced that every difference is a disorder even if it can be shoved into one or more boxes, and calling so many of us as disordered for being a bit off the mean can be overdone. I think we can find help and tools to help ourselves be our best selves as adults with or without being labeled as having this or that “disorder.”

I hope this is not coming off as a threadshit. If so I apologize.

133

I wonder about the future of “neurodiversity” (especially when reading threads like this one). In the long run, will we…

…identify yet more conditions to add to the list alongside ASD, ADHD, etc.?

…have ways of determining precisely what conditions and characteristics people have, by doing something like scanning their brains and identifying specific physiological indicators?

…abandon the idea of “neurotypical” vs “neurodiverse” altogether, and just say that people in general are diverse, and their brains are wired in all sorts of different ways and they have different sensitivities and personalities and strengths and weaknesses?

134

I haven’t read it, but based on what I’ve heard, you’d probably like Neurotribes. For the most part in autistic spaces there is no expectation of diagnosis, and saying you are self-realized based on shared traits is not a problem. There is very little gatekeeping. There tends to be an ideology that runs against the deficit model.

As for me, I’ve been throughout most of my life kind of a mess. In college I was a huge mess and I find labels help me to create order out of the chaos.

I can’t offer a bunch of examples of tools for autism because this is a new paradigm for me. But I have been listening to Megan Neff (AuDHD psychologist) in her podcast about autistic burnout, Divergent Conversations. To hear someone describing what I’ve been going through for the last year is comforting in its own right. Getting into the nitty gritty of what caused it and how to heal from it and prevent it from happening again is just one such example. Finding a therapist who understands AuDHD and trauma is gold. And I’m reading Neff’s workbook about neurodivergent burnout. It all gives me language to communicate with my husband, too.

I’m deeper into Unmasking Autism and at one point I just broke down because I have so much shame for inappropriate things I’ve done and said over the years. I remember all of them. I’m so ashamed I’m not sure I can talk about them. Getting beyond the shame would be nice, and would probably help with my significant social anxiety.

One of my major interests is clinical psychology. I’m watching how my therapist does her assessment. She’s using scientifically validated tools, observation and self-report to make her determination. I could point out the weaknesses of her approach (she can’t talk to my Mom , for obvious reasons) but she knows more than I do about autism and ADHD. She works at a clinic specifically for autism and ADHD, most of her clients present that way and she has lived experience. I’ve never had the experience of someone that knowledgeable about ADHD or autism.

In contrast, my husband has a PhD in clinical psychology, and when we were discussing the question of how to tease apart ADHD, autism and PTSD, he had no idea. He found that clinician for me, though.

One thing I thought was notable is she’s been collecting information to determine her diagnosis while having me talk about my trauma. So she subverted the possibility of me really listing a bunch of autistic traits by just getting me talking about my life. I ended up revealing more than I thought I was. (We have been talking about my hyperfixations, though. We discussed that last session.)

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Scientifically validated instruments for autism are available for free on the Internet so I have a hard time believing clinicians don’t use them.

Unless you think every adult autistic needs to go through the ADOS, despite the expense and the evidence that high-masking individuals, most of whom are women, are usually missed by it. In my view the ADOS should really only be necessary for accommodations and people with higher support needs. Personally I did not have need of it. I don’t plan to do anything with the information other than use it to try to tackle my issues before my life falls apart.

There are a lot of complaints about over-diagnosis, I heard them when my son was diagnosed. But in reality we have a lot of people who are missed. Which is arguably worse.

136

I really don’t understand your perspective here. Are you really saying that you don’t think that there is any difference between someone who specializes in marriage counseling and someone who deals with autism? Those don’t have different experience and skill sets to deal with different problems?

Sure, there are bad actors in every industry, and your wife is right to complain about them. Better “Help” for instance… But you are a doctor, right? You know that there is a difference between a GP, a heart surgeon, and an oncologist, right? Those aren’t just marketing terms, right?

This isn’t a gotcha question, I really don’t understand what point you are trying to make here.

It’s a disorder if it interferes with your life. That’s kinda the definition, otherwise, it’s an eccentricity.

Is it interfering with these kids lives? Maybe, maybe not, they are still young and figuring things out themselves. But will it interfere with their lives in the future if it’s not addressed? It may not, but waiting until it does means waiting until it is too late.

I used to joke that I was in school today, they’d have me on a bunch of drugs. Well, maybe I should have been, or at least found some sort of help a bit sooner in my life.

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Yes. Don’t think any individual looking for help with possible sign and symptoms of previously unlabeled ASD as an adult would be looking at a marriage counselor though.

Yes. Years of different training. Very strict board certification and recertification for each specialty. None of which applies to a therapist who claims special expertise or “certified” on their Psychology Today or website profile.

It is how it gets defined but I pushback against that framing even as I treat it.

I’ll use this as an example: trans kids being trans interferes with their life. In the society in which we live it is hard for them because of how they are wired. They have higher suicide rates as a result. But I don’t see them as disordered. In a previous era gay kids same, and still in some communities. They are not disordered.

The expectation for narrower sustained focus at earlier ages is much higher now than it was throughout most of our species evolutionary history. Many kids are having their lives interfered by their inadequate sustained focus on the subject of the class. They are not abnormal. They are to my mind not disordered. But the classroom and the workplace are the world in which they need to function … so we treat to the degree that allows it to not handicap them. That doesn’t change the fact that the brain processing style has strengths that just aren’t well highlighted in the classroom.

I know @Spice_Weasel gets this because I read her loving celebrations of her child’s strengths at least as much as she shares his challenges. Not all of us do for our kids or ourselves.

I haven’t read Neurotribes but I am … wary? Part of my concern is the drive to that tribal identity by diagnosis? I am much more comfortable with celebrating

138

I think there are some cool things about how my brain works. I’m both analytical and highly creative, I’m rarely bored, I strive for excellence in my written work, I can find patterns and themes across multiple disciplines, I’m deeply silly (this really only comes out at home), I care very much about people, and I’m good at in-depth conversations. And I’m smart enough to figure out solutions to many of my problems. I’m still in awe of how I can start from a blank page and weave an entire world full of complex characters without really thinking it through; it just happens somehow. When you’re writing a novel and are continually surprised by your own writing, that is a marvel.

If all I had were those strengths that would be great.

Unfortunately all of that comes with a lot of shit that makes my life really hard. I’m not comparing it to anyone else’s life, it’s just subjectively, for me, hard. Just holding it together takes an incredible amount of effort. I’m skeptical I could hold down a 9-5, I just happen to be incredibly privileged in my employer’s expectations.

My husband is away from home so it’s just me and the kiddo and I’m struggling just to take him to the library today. I’m gonna do it, but it’s a whole thing. I’m acutely aware of how much my husband pushing us to do things keeps me from being a stick in the mud parent. I don’t want to go anywhere or do anything. It takes so much energy. It’s like lifting a boulder.

These aren’t minor things. These are things deserving of care and attention and support.

Unfortunately no perfect therapist exists for my issues. I had to go with the one that was the best fit. Unfortunately the first referral, to a neuropsychologist did not pan out because my husband knew him. My husband knows everyone. Everywhere I go has to be vetted through his social network.

This current one ticked some of the boxes that were most important to me and some others I had to let go. I had low expectations and she has surprised me.

139

But how would you know if they don’t use labels as to what they specialize in? I truly do not understand what you are objecting to here.

I don’t understand what you are saying here. Yes, therapy is licensed, and yes, so are specialties. They don’t just make up stuff and put it on their profile.

If you don’t think that the licensing is strict enough because some are pushing diagnosis you disagree with, then that’s a whole different matter. But I’ll point out that there were board certified medical doctors pushing ivermectin during COVID. Should that make me doubt doctors in general? That’s kinda what I feel you are coming from here.

I really don’t know what you are doing here, either. It’s like you are trying to define the word “disorder” in a way that you want it defined, without actually defining it.

The problem is that it’s not the word that needs to be discussed, the word is just a word. The question is whether it is or will cause them problems, and what interventions are best to reduce or eliminate those problems.

Watching your body play the part of an actor in life while experiencing none of it yourself, I don’t know if that falls under your category of disorder or not, but it certainly has a negative effect on the experience of life.

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I don’t really get the upset over labeling things. It seems so efficient to me. But it really bothers some people.

I find my life much more manageable when I can label and tag everything.