Autistic Adults Catch-All

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I've created this as a spin-off of the autism thread, because I saw two separate, but related trends going on in there:

1. The trials and tribulations of raising a child with autism

2. The trials and tribulations of being an adult with autism

This thread is for the latter.

Here's a tidbit for discussion: 'After what I've been through, don't tell me I'm not autistic'

Oftentimes, people will equate autism with being nonverbal, or being perpetually infantile (and therefore infantilized). It's infuriating when you get that from professionals.

Two paraphrased examples:

My primary physician, when telling her of my diagnosis: "I never would have thought that." (I wish I had grilled her for details, but I was still quite new to the diagnosis myself.)

My psychiatrist: "So your speech was delayed? Asperger's is a delay in speech; autism means you can't speak at all." (I threw the DSM V at him, but he remained unconvinced.)

I'm not quite ready to pen my LiveJournal tonight, but I'm happy this exists now

clover wrote:

I'm not quite ready to pen my LiveJournal tonight, but I'm happy this exists now :D

We'll be here when you're ready, Certis willing.

Speaking of LiveJournals, I'm toying with the idea of blogging about everything going on lately, but I'm not sure how to go about doing it. How do you effectively blog about having a condition that impairs your communication skills? It's a bit of a Catch-22.

sometimesdee wrote:

How do you effectively blog about having a condition that impairs your communication skills?

With comments turned off

sometimesdee wrote:

Here's a tidbit for discussion: 'After what I've been through, don't tell me I'm not autistic'

Hope you don't mind me butting in, but I want to thank you for sharing your experiences and that piece. Very powerful stuff. I know every individual is different, but I'm curious/worried about my sob's future and am willing to learn anything or everything I can for him.
So thank you.
And apologies for invading the thread.

Thanks for reaching out. I'm going to also. Hopefully this helps someone. Maybe it'll help someone on the autism spectrum not feel so alone. Maybe it'll help a friend realize that sometimes you have to reach out more than halfway to me, and sometimes I simply don't know what to do. (I'm very sorry when those are true.) Maybe it'll help a parent or loved one with their own interactions with someone on the spectrum.

I also get the "I never would've guessed!" paired with disbelief from people. It is nearly always meant well, but that's actually rejecting a core part of me. After all of these years I may be better at coping with it, but it's still me. It never goes away.

I was simultaneously diagnosed and not as a kid. My mother took me to person after person wondering why I rebelled at school when I was apparently brilliant. There were intelligence tests, skill and knowledge evaluations on every subject, procedural evaluations where the way I took a test was examined. The most meaningful thing anyone could say was that:

1. I was wired differently, but had found my own way around it with my intelligence. I was going to be 'quirky'.
2. There was nothing they could do.

Had the focus been on the psychosocial aspects of my life at that point, #1 could have been a diagnosis of "something" and #2 would have been absolutely wrong. There was no 'aspergers' at that time, but I may have still received some meaningful help. As it was, my mother gave up and decided I was going to be who I was. She feels guilty about it now, as if she wrote me off. I only see a mother who had difficulties enough. Deciding to let me be wasn't the worst thing she could have done.

So, besides being 'quirky', a 'loner', and 'independent'. Besides accepting (sadly) the fact that I had no close friends and wasn't sure how to maintain relationships, I had no clue why those things were true. It took decades for me to understand myself and start intentionally coping along with doing the slow job of dismantling the old hacked together coping mechanisms to reveal the true nature of the person living inside them. As someone who loves to solve problems, I have to constantly remind myself that there is never going to be a solution because there's no problem to solve. There's only who I am, and that's okay.

For those who hate Phil Collins, this is a trigger warning. Stop here.

Otherwise, this is for us.

Thanks for this thread!

I'd like to ask what factors you all consider if/when you tell others that you are autistic. Also, what reactions have others had? How has it changed their behavior towards you?

My autistic son is 4, and I'm pretty open right now to letting others know he's on the spectrum, but as he gets older, I'll have to revisit that policy. What's struck me is how much more open a lot of people have been about sharing their own connection to disability when I tell them about my son - many have a child, sibling, or other close relative who is autistic or something comparable.

concentric wrote:

I'd like to ask what factors you all consider if/when you tell others that you are autistic.

I'm still trying to figure that one out for myself. Since the diagnosis is new to me, part of me wants to tell every Tom, Dick, and Harry, just to see their reactions. However, so far, I've only told a few family members, really close friends, and other friends who I thought might be more understanding, for various reasons, especially if they have disabilities themselves. Through my post on Facebook (to selected people), I found out that my friend's husband is an Aspie.

That being said, I'm not exactly hiding it from anyone, either, as I use "sometimesdee" across many platforms. I'm not advertising it (in person), but I won't lie about it, either.

(And, of course, I've informed my doctors.)

That's pretty much how I'm going about it too.

This is going to seem super silly, but... I've been reading "Autism for Dummies" (gotta start somewhere, and I'm just tired of reading clinical trials and meta-analyses), and they had a section which spoke of an "AQ test". Have any of you taken it? Would you mind sharing your score? Concentric was talking in the other thread about how parents of autistic children sometimes have certain traits, and I've just been wondering about some stuff about myself, my OCD tendencies, I'm not always very good with people. I did score 38, but I guess maybe I'm just an introvert? I don't know. Anyhow, sorry for prying, I was just curious about how valid this test is.

Am definitely NT but interested in reading this as I know and have known many people on the spectrum and would like to understand more.

I scored a 42. It hits on some reasons why I believe I'm on the spectrum. Social situations, keeping track of multiple conversations is pretty much impossible for me, need for routine and planning, visual thinking, affinity for numbers, randomly focusing on license plates and such, etc.

Thanks for your input, PurEvil. By some weird cosmic alignment, my dad took it too this afternoon and sent me the link. He scored 37. We both have the same proclivities you cited, a need for planning, an affinity for numbers (he's an economist, I'm in public health and do lots of epidemiology / statistical analysis stuff), we're not very social. I'm definitely going to try to avoid the "guilt" path, but it would explain a LOT about myself, my dad and my son.
I also did the Baron-Cohen's Empathizing Quotient (EQ) et Systemizing Quotient (SQ) tests and respectively scored a 10 and a 57, FWIW

I got a 40 the last time I took it.

I don't think it's appropriate from a diagnostic standpoint, and so I'm always hesitant to discuss things like it too much and fan the fire some people have about "I took this quiz online and it said..." or "my SO totally does this stuff...".

However, I think it's good as a thought-provoking tool, and because people who are diagnosed as adults often come round to the idea that there might be a pattern to their behavior (;)) by reading online, myself included. I still find it useful to look at as shorthand, partly to remind myself that other people have very different answers, and also to realize that as a kid my tally would have been higher. I'm only decent at things like "social chitchat" because I've made an organized study of them out of necessity, not because I have any innate talent for it at all.

Also, there are plenty of math-loving introverts that are neurotypical, and that's not a bad thing! As long as quizzes don't lead to personality shorthand I'm ok with them.

Eleima wrote:

I also did the Baron-Cohen's Empathizing Quotient (EQ) et Systemizing Quotient (SQ) tests and respectively scored a 10 and a 57, FWIW

12 and 61 respectively here. I like these tests, but agree with clover. They're interesting, but they really just help me point out some of the quirks I have from the traits I actually believe put me on the spectrum.

Oh, absolutely, I'm also very wary of jumping to conclusions and self diagnosing (and if anything, my husband is always quick to remind me if I forget). It's just a lot of food for thought and it would explain so much. My father has always been the type to retreat in his office whenever we had company over. I don't do well with people, forget faces, am uneasy with prolonged eye contact, always mistake people's intentions, and gave up any semblance of clinical practice. I need to do more thinking and get a professionnal's opinion, but my son comes first anyhow.
I was just curious, whether or not the test was valid or not (and I did find a few studies on the matter).
Anyway, sorry to hijack/LiveJournal, I'll be quiet now.

Eleima, try to use it to relate to your son when things are hard. Clocky and I had a long chat a couple days ago (I'll post the log later if she says it's ok) and it made me think about how finding ways you can understand what they're thinking and feeling will help your kids out.

Like I posted in the other thread, the thing that scores me "atypical" or PDD instead of "truly" ASD (whatever that means) is mostly possessing abilities that let me give other people a window in.

Meanwhile, in adult life, I make exactly the same thing for breakfast every day, and I'm still mastering the process of brushing my teeth. Some things don't change much...

A little note on the self-diagnosis thing: I always thought I was a little autistic when I was younger. Although I didn't really know what that was. It was just a bundle of personality types like awkward and nerdy and likes D&D that got thrown together into a pseudo-diagnosis.

Well I found out much later in life I score way above average on things like facial cues, empathy, lie detection, etc. Politics and human motivation remains fairly transparent to me and am told I'm actually quite outgoing and charming in person. Basically the opposite of what I've been led to believe for decades.

I do, however, suffer badly from depression and anxiety and grew up in bogan suburbia where an interest in anything other than football, cars, and being a creeper were seen as signs of being some kind of retarded.

I guess what Im saying is sometimes it's the social baseline you're comparing yourself to that's skewed.

I'll shut up and sit quietly at the back now.

AQ test for me: 23, above the mean of 16.4, but definitely in a lower range than the others here.

EQ/SQ tests: 41/54. For me that contextualizes the traits I see in myself that are more spectrum-like, namely, the interest in systems and details, as well as the degree of interest I have in them.

I think I would have had a higher AQ and lower EQ about 20 years ago for various reasons. Again, I know I'm NT, but at the same time, I've had to learn social rules in a deliberate way. I am sure my husband would have a higher EQ than I have. My strong interest in academics came to be balanced out by the really positive experience I had overall in the military, where I discovered how much I liked working with others. I'm definitely more introverted, and social situations do make me anxious. I'm always looking for an escape plan. For me, the structured environment of the classroom provides a social outlet with clear boundaries and purpose. If I were a doctor, I think that I would enjoy working with patients, but the routine would keep me feeling safe.

Eleima, I don't think you're livejournaling! I appreciate your perspective. But then again, I may be doing the very same thing. When my son is old enough, I'm curious about how he would score on these tests.

clover wrote:

Eleima, try to use it to relate to your son when things are hard. Clocky and I had a long chat a couple days ago (I'll post the log later if she says it's ok) and it made me think about how finding ways you can understand what they're thinking and feeling will help your kids out.

Like I posted in the other thread, the thing that scores me "atypical" or PDD instead of "truly" ASD (whatever that means) is mostly possessing abilities that let me give other people a window in.

ETA: Working with my son's therapists to understand what cues he sends has really helped in this regard. PCIT has been wonderful for helping me develop a closer connection to my son for similar reasons. I really value the insight of the people on this thread as well. I say all this because I am definitely still learning about how best to engage with my son.

I think I will make a go at observing and disentangling anxiety from more deeply... neurodiverse? things for myself. I do know that even when I'm not in periods of anxiety the other baseline remains.

I also need to find a term I can use for "not-NT".

Meanwhile, back in adulthood, I have an ADHD coach coming to my office today for a sample session. My big struggle right now is in making peace with the pile of meds and supplements I take for support... while it's not a given, there is high comorbidity among ASD, bipolar, and ADHD (as well as depression and OCD, and research is reflecting this now).

I try to remind myself that my brain is like a track-only Ferrari, not a Toyota, that tuning for optimal performance is logical, and that being able to observe and adjust my neurochemistry on such a subtle level is a good thing.

clover wrote:

I think I will make a go at observing and disentangling anxiety from more deeply... neurodiverse? things for myself. I do know that even when I'm not in periods of anxiety the other baseline remains.

I also need to find a term I can use for "not-NT".

Meanwhile, back in adulthood, I have an ADHD coach coming to my office today for a sample session. My big struggle right now is in making peace with the pile of meds and supplements I take for support... while it's not a given, there is high comorbidity among ASD, bipolar, and ADHD (as well as depression and OCD, and research is reflecting this now).

I try to remind myself that my brain is like a track-only Ferrari, not a Toyota, that tuning for optimal performance is logical, and that being able to observe and adjust my neurochemistry on such a subtle level is a good thing.

I'd be interested in hearing your thoughts about this. I have anxiety and (perhaps subclinical) OCD. The latter meaning that I've discussed it with my therapist, who noted how many of the DSM criteria I met for it, but who also pointedly refused to give the label, so that I wouldn't obsess over it.

I take a low level of citalopram to manage things, but otherwise behavioral modifications keep my brain running well. I've had to make these practices a habit, because they're as necessary for my health as brushing and flossing.

I wonder whether my and my husband's DNA combined to push my son over the threshold for ASD.

PurEvil wrote:
Eleima wrote:

I also did the Baron-Cohen's Empathizing Quotient (EQ) et Systemizing Quotient (SQ) tests and respectively scored a 10 and a 57, FWIW

12 and 61 respectively here. I like these tests, but agree with clover. They're interesting, but they really just help me point out some of the quirks I have from the traits I actually believe put me on the spectrum.

So I just did this and got a 28 and 71.

I think what's interesting is that I am decent at understanding how other people feel (enough to get booted out of Asperger's range), but really terrible at "responding appropriately".

Your Empathizing Quotient is 28. Baron-Cohen (2003) suggests that this means "you have a lower than average ability for understanding how other people feel and responding appropriately".

Your Systemizing Quotient is 71. Baron-Cohen (2003) suggests that this means "you have a very high ability for analysing and exploring a system. Three times as many people with Asperger Syndrome score in this range, compared to typical men, and almost no women score this high".

I believe I got a 31 on the AQ test. However, I take Borat's cousin Simon Baron-Cohen with a grain of salt, since he often confuses autistics with sociopaths.

Your Empathizing Quotient is 19. Baron-Cohen (2003) suggests that this means "you have a lower than average ability for understanding how other people feel and responding appropriately".

Your Systemizing Quotient is 33. Baron-Cohen (2003) suggests that this means "you have an average ability for analysing and exploring a system".

Yeah, the whole low-empathy thing is bollocks, in my view. I subscribe to the Intense World theory myself.

In response to "Things never to say to parents of a child with autism," there is "Fourteen Things Not to Say to an Autistic Adult."

sometimesdee wrote:

In response to "Things never to say to parents of a child with autism," there is "Fourteen Things Not to Say to an Autistic Adult."

Ugh, f*cking "normal". No, I'm not normal, I don't want to be whatever it is you mean when you say that, and even if you mean "neurotypical" I don't want to be that either... jfc people. Like well-meaning assholes who want to suggest cures... f*ck off with your "let's cure autism" bullsh*t, because when you say that all I'm hearing is "it's too hard to think about or deal with the things that make you and your ilk different from the rest of us, so it's better if we just 'fix' you so I don't have to be uncomfortable around different people and I can have my societal white-picket fantasies back". Behavioral strategies are awesome, and therapy is necessary, but mostly because I have to spend every sleeping and waking moment immersed in the sea of noise and drama and emotional bullsh*t you and everyone else are constantly spewing out without a second's thought or hesitation.

Whew. That was a little cathartic.

*slow clap*

I have a daughter with diagnosed Asperger's. I see all together too much of her behavior and social challenges in my past, enough that it is fairly upsetting to think about. As it's been said elsewhere, they did not diagnose these things that far back, and I suppose I really don't want to find out enough to let a psychologist anywhere near me. I have my coping mechanisms for the most part, and my spouse is a good and patient person.

That being said: 20 / 54 on that test. I think it WOULD have been a lot more extreme 20 years ago, which is kind of fascinating.

clover wrote:

Behavioral strategies are awesome, and therapy is necessary, but mostly because I have to spend every sleeping and waking moment immersed in the sea of noise and drama and emotional bullsh*t you and everyone else are constantly spewing out without a second's thought or hesitation.

This x10. It's always been harder for me to cope with this than physical danger or any other challenges not involving people.

Best wishes, folks.

Thanks for all the feedback. I definitely didn't mean to say that the AQ test and SQEQ tests are the be-all and end-all, or that it was as simple as being an introvert and into math. I've just been wondering about myself, lately. I see a lot of myself in my son, and my close family has come forward in the past six month about how I interact with them. Which is why I want to follow this rabbit hole and see where it leads me. Interestingly enough, my husband scored a nice round 10 on the AQ test.
Anyhow, enough about me, my son comes first, and I'm just here to learn as much as I can (thanks for that "Fourteen Things Not to Say to an Autistic Adult" link, Clover).

Oh, I didn't mean you were oversimplifying like that, you just asked for my opinion of them so I gave it. I also know threads like this get a lot of lurkers so I try to include a little extra context when I write (hello lurkers :))

Dee is bringing the links, so all credit to her for those.

::

The practice round with the ADHD coach went really well also. I definitely am going to start working with her; looks like once a week is her usual arrangement.

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