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Quill

S/o Autism rates increasing and adults never diagnosed

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3 minutes ago, Rosie_0801 said:

 

What does that mean? It's funny you should say that when I've just finished using the word "intuitive" in a post to Katie.

I'm not exactly sure what you mean, but here's a "for instance" that involves something other than modifying speech:

A couple of years ago we were at my MIL's. This is a lady who is very dear to us. DS has seen her for at least a couple of hours almost every week of his life. We walked in the door and I knew within ten seconds that she was worried or upset about something. I think I'm fairly NT, and my perception was probably a combo of intuition, reading body language and simply knowing someone well.

After our visit was over and we were on the way home I wondered aloud what she might have been worried or upset about. And DS was like "What? I would never in a million years have known anything was wrong." So I had to explain to him all the details I picked up on that made it clear to me she was worried--she looked a lot more haggard than usual, she seemed distracted, she wasn't as talkative/upbeat as she normally was, etc. Once I explained how to put all those things together and what they likely meant he was like "Ok, got it." And he filed it away in his brain and will use that for future reference. He can quite easily learn those things intellectually. But he'll never (I don't think) be able to intuit a person's mood, even someone he's very close to.

I hope that's what you meant??

I think I understand the sense/sensory thing you referred to. Is it like the analogy of an autistic person constantly being in a foreign land? I'm pretty sure that's how life is for DS. I don't think his is forged through trauma, but I do think he uses his working memory--and he is profoundly gifted in that area--to help him navigate through daily life. He relies on his memory to dredge up everything he's learned intellectually about how to fake NT. And even with prodigious stores of working memory to rely on, faking it still wears him out.

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1 minute ago, scholastica said:

Oooh, do you think we can have introvert heaven and extrovert heaven...? 

 

Maybe there can be different rooms. The extroverts will have a constant party but the introverts can pop in ocassionally for a glass of wine and some brie. Then, we get to leave. 

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51 minutes ago, Rosie_0801 said:

 

Um...
I definitely won't armchair diagnose Quill with NPD either, but I'm afraid your arguments against Quill being autistic are pretty good arguments for her being high functioning autistic.   🤣

No offence, Quill!

 

 

Would you then expect NT people to be born with the ability to behave correctly in whatever social situation they find themselves by ?instinct? without training or modifications?

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10 minutes ago, Pawz4me said:

I'm not exactly sure what you mean, but here's a "for instance" that involves something other than modifying speech:

A couple of years ago we were at my MIL's. This is a lady who is very dear to us. DS has seen her for at least a couple of hours almost every week of his life. We walked in the door and I knew within ten seconds that she was worried or upset about something. I think I'm fairly NT, and my perception was probably a combo of intuition, reading body language and simply knowing someone well.

After our visit was over and we were on the way home I wondered aloud what she might have been worried or upset about. And DS was like "What? I would never in a million years have known anything was wrong." So I had to explain to him all the details I picked up on that made it clear to me she was worried--she looked a lot more haggard than usual, she seemed distracted, she wasn't as talkative/upbeat as she normally was, etc. Once I explained how to put all those things together and what they likely meant he was like "Ok, got it." And he filed it away in his brain and will use that for future reference. He can quite easily learn those things intellectually. But he'll never (I don't think) be able to intuit a person's mood, even someone he's very close to.

I hope that's what you meant??

 

You may be surprised. It's like how you teach a kid phonics, and with practice it becomes a sight word.

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I

think I understand the sense/sensory thing you referred to. Is it like the analogy of an autistic person constantly being in a foreign land? I'm pretty sure that's how life is for DS. I don't think his is forged through trauma, but I do think he uses his working memory--and he is profoundly gifted in that area--to help him navigate through daily life. He relies on his memory to dredge up everything he's learned intellectually about how to fake NT. And even with prodigious stores of working memory to rely on, faking it still wears him out.

Lol, your son might be better at it if he was more traumatised. Trauma teaches urgency.
Yes, that analogy works well enough for what I meant. I don't much like the analogy though. This IS my land, no matter how unwelcome I might be in it sometimes. I read an essay last year where a woman was talking about books like the first two 'Rosie' books and 'The Curious Incident of the Dog in the Night' feeling like cultural appropriation. I liked that better. I am not a foreigner, but I do belong in a different sub-culture. I wonder if I would mind less the effort I have to put in to "pass" (i.e., protect NT people from the inconvenience of me) if they also considered it socially inappropriate to lack the ability to function bi-culturally themselves.

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15 minutes ago, Ktgrok said:

And there were more "acceptable" jobs that might fit someone with social and sensory issues. 

Speaking of which, I just recently started taking over yard work in my family, and now get why my dad liked yard work on the weekends - no one bugs you when you are running the lawn mower! Introvert heaven if you can find hearing protection to keep out most of the noise! No one talking to me, a set job that has a beginning and an end, no wondering about vague stuff. Just "cut this, clip that" lol. Of course, that I can realize and appreciate that the lawn should look a certain way (and my son on the spectrum can't) may be a sign that I am NOT on the spectrum. 

Yes! I discovered this when I had two little ones ( for various reasons we haven’t had to mow in the last places we’ve lived.). I loved mowing!  No one could come near me and I couldn’t even hear if anyone cried. It was bliss.(Swimming Laps works the same way.)

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4 minutes ago, Pen said:

 

Would you then expect NT people to be born with the ability to behave correctly in whatever social situation they find themselves by ?instinct? without training or modifications?

 

That would be a funny thing to expect, wouldn't it, with how everyone goes on about "socialisation."

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12 minutes ago, Quill said:

Maybe there can be different rooms. The extroverts will have a constant party but the introverts can pop in ocassionally for a glass of wine and some brie. Then, we get to leave. 

And introvert hell is just being placed in the  wrong room!

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1 hour ago, Murphy101 said:

What I would love is for the labels to be thrown away and for schools to be set up with the premise that everyone is bleeping screwed up in some way or another and will need some kind of help to navigate academics and society.

Instead we have this donkey butt backwards system of presuming everyone is some mythological normal and the only way anyone gets any help of any kind is if they are far enough off to qualify for a label.  Then they get to add the label to crap they need help with.

Yes!!!! I have been reading along and I have so much to say about all of this, but THIS is what I wish too.  

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3 hours ago, HeighHo said:

 

For sure.

What you said up above about "sorry, I can't eat with you while you do x", then take your plate and leave is pretty much what the kids here do if they don't take on a caregiver role.  "I'd love to play blocks with you, maybe later when you feel up to it" is the type of thing I"ve heard.  By middle school its " s/he's having a rough day, leave her/him alone", then convo later if the upset person wants it.  They just don't move in and attack in the moment of vulnerability.

See that's amazing that the kids have had modeling or been taught to interact this way with each other. 

 

2 hours ago, Garga said:

His parents beat him mercilessly for his quirky ways.  It was absolute abuse.  They showed him little love and a lot of derision.  He was not raised by a woman not allowed to confront him.  His mother was downright mean to her kids.  (I have written about the one time I met her and how cold she was to me.)

If he is seriously confronted, (like if someone gets mad) he gets extremely sad.  There isn't a single bullying bone in his body.  If you saw him and confronted him, you would feel like you'd just kicked a puppy.  A puppy who has no idea why you're kicking him and doesn't learn from it, other than to be scared of you.

What a horrible situation! Again, the point of ABA, no matter when you start, is to help him piece together cause effect. ASD does not mean he does not have a choice. It means he isn't making the connections to realize what his choice is and to know how to choose better. You would literally start at the beginning with him, looking for the function of the behavior and helping him get that function a more appropriate, pro-social way.                                             Stop That Seemingly Senseless Behavior!: FBA-based Interventions for People with Autism (Topics in Autism)                                       Here's the book that would help you do this. The behavior has a function, so find the function and help him make better choices. There are so many respectful ways to do this. If he wants to be funny (attention seeking), you give him joke books and help him share them. You could ignore the "see food" if it's for attention seeking and immediately ask for his jokes or the replacement behavior you're teaching. If he's truly not malicious or gaining power by his actions, you might be able to use some positive techniques like this. If it would bring peace, it might be worth bringing in a behaviorist, if you could find the right one. Ours is a licensed social worker, so it would just be like oh a social worker came to the house. They do that when you have illnesses, social workers appear.

Fwiw has anyone ever wondered if he had some ID or trauma? Now that would be very hard to resolve, but he could have layers like that. Trauma creates a layer of disconnect and dissociation that will disconnect him from people, sigh. Just as an aside, my father's family was that way, very rough, and it had differing effects on each child. I think it's that line of undiagnosed problems showing up different ways in each generation. There are some stats on bipolar parents of ASD kids and there's a strong correlation. 

2 hours ago, Garga said:

My dad might not have ASD, but he has something.

Fwiw, he clearly has something going on, but it might be layers. If he was abused, he may have trauma, possibly brain damage. That's horrible to say, but it happens. He's blessed to have a loving marriage relationship. 

2 hours ago, Ausmumof3 said:

I don’t think that’s always true though.  We have some people in our life with autism and I really encourage my kids to be kind, be inclusive.  But I get pushback from my kids (even though they have their own quirks).  It only takes a couple of experiences when a kid breaking something of theirs or hurting them and they become reluctant to put themselves on the line again.  

I really appreciate you expressing that and it's a very fair point. In one case I know it was the mother, because the boy was asking for the playdate and the mom wouldn't schedule. But it's really fair to ask if it has been the kids in other situations, definitely.

2 hours ago, Garga said:

 

Yes, I'm regretting that I started typing on this thread.  How do I boil down a man's entire lifetime into a couple of paragraphs without confusing everyone or misrepresenting him?  In my first post I accidentally left a lot out because someone posted that maybe his mama should have smacked him when he was a kid (not knowing that he was very much smacked around as a kid for his behavior) and I didn't express how he's gentle and tries to connect to people, but fails over and over.  Smacking or angry confrontation won't solve what's going on with him.  I didn't express properly that the bad behavior continued because he seems incapable of reading facial expressions (for one example), and not because he was on a power trip.  

So, I do think there are some definition issues and scope issues.  

 

Fwiw I've had too many run-ins with men who are in that iffy spectrumy land who are on the malicious side. That's where I was coming from. I so agree with you that your dad needs the totally opposite treatment. I wasn't meaning to make you feel bad about your dad. My dad is sort of odd in his own ways too. He was so violent when we were growing up, but if you knew him now he wouldn't hurt a fly (on meds). It's not possible to summarize anyone in a sentence or a paragraph, and I think you're right to look for the intentions underneath the outside. 

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35 minutes ago, Ktgrok said:

I think it COULD be...it may just be across the border from it. I don't think I'm HFA, I don't THINK my late ex was HFA...although possible. But definitely our son is. I'm probably just across the border between HFA and NT. I have several of the traits but I don't think they are to the extent I'd need a diagnosis or trouble with life. Although..hoenstly, I may just be better at masking and it may be the difference between girls and boys. Not sure. Pretty sure my dad is HFA. 

(the traits I see in myself are things like perseverations. I can spend days/weeks obsessing about something, researching it at all hours of the night, dreaming about it, etc. Often to no real purpose. Like, I know SO much about keeping backyard chickens but have never owned a chicken nor do I particularly plan to. But I know breeds, diseases, feeding, even how to butcher them. Because I had a chicken "phase". Also a cloth diaper phase where I literally couldn't sleep for obsessing/reading/etc. I also have social anxiety, etc but I'm very good in many social situations and actually was the go to person for difficult client interactions at work. Now, is that a sign I don't have HFA, or a sign that I got SO good at code switching/mimicking/etc that it made it easier for me to figure out and take on whatever personality was needed at the moment? No idea.)

Truth. I actually wonder if the lack of a coherent, accepted body of ettitquitte makes it a lot harder for people on the spectrum. It used to be you could be taught the ins and outs of polite behavior, and it was done explicitly, with a book and everything if need be. Now, it varies so much and there are not a lot of books on modern social niceties.

Relate. 

Quote

You may be misunderstanding narcissism, when it is used for a mental health issue versus just kind of self centered. ASD can appear as self centered, as can ADHD. But NPD is different...it's USING other people, purposely, and manipulating their emotions. Often not even really to their own benefit, just to DO it

But I was thinking isn’t it possible to misunderstand the nature of someone’s butt-headedness? 

There was this one time when my BIL said something at a holiday dinner which he had been implored moments before not to mention. (It was about a not-present relative’s sexual orientation.) So was he being his often-obtuse self? Or is he just the biggest dick you ever met? I don’t really know, but I think there’s something not-right with him that he would do that. I don’t think he’s just mean, although that is one possibility. I think he’s dense. I think he thought he was being funny. Only it was as far from funny as one can get and he upset the person so much, they left. Even after seeing he caused upset, he did not grow sheepish or embarassed. He shrugged as if, “meh. I thought it was funny. Guess nobody else thinks so.” 

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1 hour ago, Ausmumof3 said:

Libraries, cats and very occasional harp playing... 

 

 

I could do with or without cats, but can’t imagine heaven without dogs.  🙂 

Unlimited audiobooks, small gatherings of close friends, happy family groups, dogs, outdoors.  

No harps or gongs needed. Though occasionally music, and more often movies would be good.  

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I read most of the thread.  It seems to me there have always been quirky people.....and those people get support they need and they thrive or they don’t and they flounder.  

@Garga your post was AMAZING for all its details.  Wow.  Just wow.  I  think many of us have known someone like your father and many times have not dealt well with them.  Thank you so much for sharing that.  

We have close friends who have a mid 20s son on the spectrum.  I would definitely say high functioning. He holds down a good drafting job.  But he still lives with his parents and I suspect he might always. His diagnosis allowed his father to understand him in way that he didn’t before.  The dad feels bad for how he treated his son in younger years.. now life is better.  Everyone knows this young man needs clear instructions and that he does t read social cues.  

My own son sometimes makes me wonder that he might be on the spectrum. He is smart but quirky.  Often socially awkward.  I have no intention of pushing for a diagnosis....I do help him work on his social skills.  

So I think we should treat each person as a human being and when they need more intervention and help, get it for them.  

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2 hours ago, Rosie_0801 said:

It seems to me that Society is pretty nasty to pretty much everyone. I sometimes wonder if "high functioning" Autism is just a low tolerance to being treated like crap. On the other hand, thanks to all that trauma, I can "tolerate" an enormous amount of crap. It's like scar tissue. 

I'm getting to think Society will one day be thanking Autistic people for needing all this "awareness" and "tolerance" and accomodation, so It will be able to give Itself permission to give all that stuff to the poor Neurotypicals who would be a hell of a lot more comfortable that way too, but haven't the justification for demanding it. Society is a slow learner, so I'll probably be long dead. I just want you all to know I'm calling it. 😛

Well said. 

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(I’ve only read the first page so far.)

A diagnosis is not a pass.  So, when my ASD kid does do something crappy, which is generally out of character for him, but it does happen (!) his dx may or may not be the reason/cause, but we do not view it as an *excuse. We’ve been working intently on behaviors since he was 4, in some ways like we’ve done with all our 4 year olds, and in some ways more heavily influenced by the understanding of his brain make up.  Had we only worked from the angle of a “typical” 4 (or 10, or 17) year old, he probably wouldn’t be where he is today.

I’m very ADD, dx’ed at 30.  It heavily influenced some crappy choices when I was younger, but I didn’t have many tools to work with.  About a dozen years later, I still mess up sometimes. Maybe due to ADD, maybe due to being human. Maybe because I didn’t utilize my tools. Regardless, I don’t get a pass. If my mistake screws someone else up, it screws someone else up.  There is no, “Oh, well. I have ADD. Move on.” My actions matter, diagnosis or no diagnosis.  But my actions tend to be much more positive when I’m using the tools my dx has given me.

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I’m 37.  I am convinced that today, if I was a child and evaluated, I would be diagnosed on the spectrum.  I don’t want to start talking about my childhood, because it was painful, but if my parents had known about autism and the signs in girls and, most unlikely of all, been willing to get me evaluated, it would/could have been so different.

As it was my quirks and lack of social awareness annoyed them greatly.  Adults were always calling my mom to complain about something I had said or done, things I didn’t understand at all. Almost invariably the situation would turn into physical and verbal abuse because she always just took their word and I didn’t understand enough to explain. I rehearsed conversations ahead of time and often just quoted books or movies, but now I know it came across as mouthy.  I thought I was being friendly or funny. I also was extremely blunt. I remember being maybe 13? And miserable in the kids choir my mom stuck us in.  The choir director asked me what was wrong and I very calmly told her I hated singing, hated choir, and didn’t want to be there.  Long story short she kicked me out and once again I was in trouble and didn’t understand at all. She asked and I answered truthfully.  I could not handle change or transitions at  all, and my parents just thought I was being difficult. I also could not(and still struggle with) knowing when someone was actually my friend.  That still comes into play a lot as an adult and has resulted in some very painful situations.  I don’t read people well and I don’t understand their intentions.

I spent many years wondering what was wrong with me.  The truth, most likely, is that I’m on the spectrum. As are my son, my sister, and probably my dad and two cousins.

I am so glad there’s a lot more education and awareness now.  I don’t really think there is more autism; I think we just describe it better and use the word autism now.  

 

Edited by Medicmom2.0
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16 hours ago, Murphy101 said:

What I would love is for the labels to be thrown away and for schools to be set up with the premise that everyone is bleeping screwed up in some way or another and will need some kind of help to navigate academics and society.

Instead we have this donkey butt backwards system of presuming everyone is some mythological normal and the only way anyone gets any help of any kind is if they are far enough off to qualify for a label.  Then they get to add the label to crap they need help with.

THIS ^^^ a 1000 times!

With all the analyzing and labeling, it seems the fact that we are dealing with human beings (and not Diagnoses X, Y, Z) has been lost--the humanity of the person truncated.  Who is this mythical "Normal" person????  Who gets to define "Normal"???? 

I read a memoir not too long ago, young woman growing up in the early 60's (same time frame as me) and as she shared her schooling years, I was amazed that her behavior (high, high energy, needy, large and loud and demanding) was pretty much treated as "Oh, she's got energy to burn" and her wonderful school teacher *let her do just that*--extra playground time was what she needed and got.....  Not a diagnosis with drugs to make sure she sat in her seat like all the other kids.....

I have a son on the spectrum and it is not something we ever let be known widely.  I appreciated knowing that he was, in fact, different (not "abnormal") as it helped me to parent him better.  With love, understanding,  and teaching, he continued to grow and mature like all my other children.  No, not at the same rate, or in the same way, but in his way.  I'm not convinced (in his case, which is the only one I'm talking about) that his "condition" is a handicap.  It is just part of who he is.  This son of mine has opened up the world to me in a quite wonderful way and reflects God in ways that I do not.  Given the freedom to be himself, he has far exceeded what some told us he could accomplish--now at age 27, he is university graduate, gainfully employed, making friends in the way he wants to, enjoying life--just like all my other kids.....

Edited by vmsurbat1
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A sweet update on my dad.  

So, he has this cancer and realized he had no one who would care. My mother said it was the saddest thing she’d ever heard him say, when he realized there was no one to tell about the cancer that would care.  

So my mom started contacting his 6 siblings and giving them tons of updates (they all live far away).  I just got off the phone with her and she said that his siblings, except for one hermit-type of sibling, have been calling nonstop for the past few weeks to talk to him and see if he is ok. This is after 47 years of virtual silence.  And today, they got news that the hermit one who didn’t want to talk, does now and asked for his number so she could call.

My father’s brother ended his last conversation to my mother with, “Tell John that I love him so much.” 

It made my heart warm that they are expressing so much love and care to him.  

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6 hours ago, Medicmom2.0 said:

I’m 37.  I am convinced that today, if I was a child and evaluated, I would be diagnosed on the spectrum.  I don’t want to start talking about my childhood, because it was painful, but if my parents had known about autism and the signs in girls and, most unlikely of all, been willing to get me evaluated, it would/could have been so different.

As it was my quirks and lack of social awareness annoyed them greatly.  Adults were always calling my mom to complain about something I had said or done, things I didn’t understand at all. Almost invariably the situation would turn into physical and verbal abuse because she always just took their word and I didn’t understand enough to explain. I rehearsed conversations ahead of time and often just quoted books or movies, but now I know it came across as mouthy.  I thought I was being friendly or funny. I also was extremely blunt. I remember being maybe 13? And miserable in the kids choir my mom stuck us in.  The choir director asked me what was wrong and I very calmly told her I hated singing, hated choir, and didn’t want to be there.  Long story short she kicked me out and once again I was in trouble and didn’t understand at all. She asked and I answered truthfully.  I could not handle change or transitions at  all, and my parents just thought I was being difficult. I also could not(and still struggle with) knowing when someone was actually my friend.  That still comes into play a lot as an adult and has resulted in some very painful situations.  I don’t read people well and I don’t understand their intentions.

I spent many years wondering what was wrong with me.  The truth, most likely, is that I’m on the spectrum. As are my son, my sister, and probably my dad and two cousins.

I am so glad there’s a lot more education and awareness now.  I don’t really think there is more autism; I think we just describe it better and use the word autism now.  

 

Liking this wasn’t enough. I’ll give you a virtual hug as well.  🦕  and this dinosaur because he’s cool and I couldn’t find the hug emoji.. 

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44 minutes ago, kbutton said:

I found this today and thought it might be relevant to the discussion: https://autismpastor.com/?p=2520   "The Real Reason You Don't Believe I'm Autistic"

 

Stereotypes are the first step on the path to understanding.

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