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Another ASD post, looking for book recs


Runningmom80
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So Amy Schumar's husband made me realize that my 13 y/o should get a diagnosis. 🙃

During her new docu-series about her pregnancy and Netflix special, her husband is diagnosed with ASD and they are both relieved to know why his brain is different. I guess in a perfect world we'd all live with our own way of thinking and it wouldn't matter, but it was the first time it occurred to me that an explanation helps. DS is "mild" ASD according to my observations and mother's intuition. (I think he'd be Apergers if that was still a diagnosis.) Could be NVLD? He's profoundly gifted and quirky, and for the most part I've chalked it up to the giftedness. I've asked SEVERAL professionals, therapists & doctors alike if I should take him for an eval and they have all told me no. I did have a pediatrician recommend a socialization class that DS took at age 7. It was weekly for 8 weeks and at the end the therapist told me "he knows how to make friends, he just doesn't want to." At that point I just started making him do different activities. He always got along with other kids well in sports and other things but never made any connections to where he wanted to hang out with any of them outside of the group. He played with his siblings when he was younger, but there is an almost 4 year age gap between them so they aren't really into the same things anymore.

He functions well enough but has no friends and doesn't care. He can't read some cues and has a very hard time filtering negative comments, because in his mind truth trumps everything. He has ticks that come and go, throat clearing things, or weird inhale/exhales. He is happy without friends, and gets along with adults best. He has bouts of intense anxiety, not so much lately, but when he was younger. He's going through puberty too so who knows which way is up right now.

This isn't a great time to make this realization, I'm not sure how to go about hours and days long testing during a pandemic, but we are going to call tomorrow and start getting some info and on a waiting list.

Anyways, I got Neurotribes on my kindle from the library. I read The Mislabled Child a long time ago when we first did IQ testing and my son was having a difficult time at preschool. Any other book recommendations? Or podcasts? I've been running through the Tilt Parenting pods for parenting "differently wired" kids, but that's the only one I know of.

TIA for reading this far.

 

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Well I was trying to figure out your question, and then I realized it was books, not *should I get him eval'ed* :biggrin: So sure, on books, fine, read widely. I don't like most any of it. A lot of books written by parents are so specific to THEIR KIDS, meaning you may or may not identify. Some books by professionals are kind of glossing. Some written by parents with degrees get kind of out there with ideas (shh, the G word) that maybe are how they thought through their kids. 

But sure, read anything. https://www.amazon.com/Uniquely-Human-Different-Seeing-Autism/dp/1476776245/ref=sr_1_3?dchild=1&keywords=neurotribes&qid=1595179260&sr=8-3   This is the only book I've read that I was like yeah, nailed it. But I was so post that it was already obvious and I was skimming. But a lot of people find it very helpful and it's spot on. Some of that stuff like the neurotribes I just don't identify with. Some are people's takes on their issues and they have holes, imagine that. 

https://www.amazon.com/Teaching-Your-Child-Love-Skill/dp/1849058768/ref=sr_1_1?crid=119OV34DAV8CU&dchild=1&keywords=teaching+your+child+with+love+and+skill&qid=1595179376&sprefix=teaching+your+child+with+%2Caps%2C165&sr=8-1  this was profound. It's more your ASD2/3, as she's parenting an ASD3. But the tone was really good.

Christine Reeve's website is good. 

https://www.socialthinking.com/Articles?name=social-thinking-social-communication-profile  If you haven't read this yet, it's worth your time. MGW has tons of other articles on there, workshops, books, etc. worth your time. You're talking about really basic cognitive therapy approaches to deficits, work EVERYONE has read trying to work with these kids. So get the jump start, read here, decide for yourself what he needs.

https://www.aapcautismbooks.com/  This publisher has THE BEST STUFF. If you're going to buy (vs. library), this is where you buy. Go salivate. Actually, I can get almost anything from here through our state autism lending library. You might see if there's one in your state. Hold it, are you in my state?? Why did I forget this? 

Here's the problem. You're reading to understand? You're reading to learn how to parent better? You're reading to see what to anticipate? You're reading to find things you can work on with him? 

Those are very different scenarios. I don't hear you saying something is going wrong, and I will tell you there IS a school of thought that you should wait until it *matters* to make a diagnosis. It should make a difference. There are the criteria, but they're supposed to affect life. 

So I think, and this is just me, that you have some time here. What you see is not necessarily what he's asking yet. And it's ok to hold that thought, read, and not eval till it IS his question. I'm not saying you have to wait, but given the coronamess, it's not necessarily a bad option. And the things I would be thinking about in the meantime are what needs to happen for his good for:

-social skills/social thinking

-language (including metalanguage, narrative language, and pragmatics)

-employability

-emotional regulation and self-awareness

If you think about what people are frustrated about with their 18-25 yos who are at that level 1 support, that's what they're dealing with, emotional regulation, employability, self-awareness.

So just me, but I wouldn't hesitate to pull the mom card to make certain things happen. Self awareness (interoception) for instance is not necessarily on his radar but it might change his life. And it's something you can do yourself during coronamess. It would put him in a better position to work on all those other things on the list.  https://www.kelly-mahler.com/what-is-interoception/

For the employability, go through this https://www.ocali.org/project/tg_aata/page/elsa_documents  The other question is whether he needs support to go through transitioning to work. Even a level 1 support person still, by definition, needs support. Full time employment rates for people on the spectrum are quite low, even with high IQ. So his level 1 support and IQ are not protective. The ELSA form helps you catch the factors you need to work on that will help him be employable, but also you want to be building those experiences.

Well I'm glad you're sorting it out. That's hilarious that SNL got you there, but I think that's why people are sharing. It's not a rush. The word might already mean something to him and it might not mean what it should mean. Words are tricky like that, and people are very particular about what they identify with or what they want to be called. As far as the NVLD, a lot of those are going to go ASD under the new criteria. Does he have language issues? The people I know personally who fit that profile were told earlier they had reading disabilities, but they sorta did and sorta didn't fit a dyslexia profile. I'm not sure there's a reason to think that instead of just using current DSM terminology and ASD. But you know, see where he's at. It's a really unique profile, that's for sure. It shows up in those social communication profiles, so see what you think after you read those and report back. 

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28 minutes ago, PeterPan said:

Well I was trying to figure out your question, and then I realized it was books, not *should I get him eval'ed* :biggrin: So sure, on books, fine, read widely. I don't like most any of it. A lot of books written by parents are so specific to THEIR KIDS, meaning you may or may not identify. Some books by professionals are kind of glossing. Some written by parents with degrees get kind of out there with ideas (shh, the G word) that maybe are how they thought through their kids. 

 

Yeah I probably gave way too much information in order to get book recs. I guess I was trying to narrow down what exactly I needed to get out of the books! 

28 minutes ago, PeterPan said:

But sure, read anything. https://www.amazon.com/Uniquely-Human-Different-Seeing-Autism/dp/1476776245/ref=sr_1_3?dchild=1&keywords=neurotribes&qid=1595179260&sr=8-3   This is the only book I've read that I was like yeah, nailed it. But I was so post that it was already obvious and I was skimming. But a lot of people find it very helpful and it's spot on. Some of that stuff like the neurotribes I just don't identify with. Some are people's takes on their issues and they have holes, imagine that. 

https://www.amazon.com/Teaching-Your-Child-Love-Skill/dp/1849058768/ref=sr_1_1?crid=119OV34DAV8CU&dchild=1&keywords=teaching+your+child+with+love+and+skill&qid=1595179376&sprefix=teaching+your+child+with+%2Caps%2C165&sr=8-1  this was profound. It's more your ASD2/3, as she's parenting an ASD3. But the tone was really good.

Christine Reeve's website is good. 

https://www.socialthinking.com/Articles?name=social-thinking-social-communication-profile  If you haven't read this yet, it's worth your time. MGW has tons of other articles on there, workshops, books, etc. worth your time. You're talking about really basic cognitive therapy approaches to deficits, work EVERYONE has read trying to work with these kids. So get the jump start, read here, decide for yourself what he needs.

https://www.aapcautismbooks.com/  This publisher has THE BEST STUFF. If you're going to buy (vs. library), this is where you buy. Go salivate. Actually, I can get almost anything from here through our state autism lending library. You might see if there's one in your state. Hold it, are you in my state?? Why did I forget this?

 

 

Yes, in your state.  

Here's the problem. You're reading to understand? You're reading to learn how to parent better? You're reading to see what to anticipate? You're reading to find things you can work on with him? 

Yes to all of these. 

Those are very different scenarios. I don't hear you saying something is going wrong, and I will tell you there IS a school of thought that you should wait until it *matters* to make a diagnosis. It should make a difference. There are the criteria, but they're supposed to affect life. 

 This is the advice my own therapist gave me which also led to me not seeking it out. But I will say this was a few years ago, before puberty and before there were things that he's just not outgrowing. KWIM? 

28 minutes ago, PeterPan said:

So I think, and this is just me, that you have some time here. What you see is not necessarily what he's asking yet. And it's ok to hold that thought, read, and not eval till it IS his question. I'm not saying you have to wait, but given the coronamess, it's not necessarily a bad option. And the things I would be thinking about in the meantime are what needs to happen for his good for:

-social skills/social thinking

-language (including metalanguage, narrative language, and pragmatics)

-employability

-emotional regulation and self-awareness

If you think about what people are frustrated about with their 18-25 yos who are at that level 1 support, that's what they're dealing with, emotional regulation, employability, self-awareness.

So just me, but I wouldn't hesitate to pull the mom card to make certain things happen. Self awareness (interoception) for instance is not necessarily on his radar but it might change his life. And it's something you can do yourself during coronamess. It would put him in a better position to work on all those other things on the list.  https://www.kelly-mahler.com/what-is-interoception/

 This is good! Yes stuff like this, but he is pretty self aware. He says he knows he's awkward. He will even say "I didn't mean that I just wanted to make you mad, but it made me feel worse." I mean, my husband doesn't have that self awareness. 🤣

28 minutes ago, PeterPan said:

For the employability, go through this https://www.ocali.org/project/tg_aata/page/elsa_documents  The other question is whether he needs support to go through transitioning to work. Even a level 1 support person still, by definition, needs support. Full time employment rates for people on the spectrum are quite low, even with high IQ. So his level 1 support and IQ are not protective. The ELSA form helps you catch the factors you need to work on that will help him be employable, but also you want to be building those experiences.

Well I'm glad you're sorting it out. That's hilarious that SNL got you there, but I think that's why people are sharing. It's not a rush. The word might already mean something to him and it might not mean what it should mean. Words are tricky like that, and people are very particular about what they identify with or what they want to be called. As far as the NVLD, a lot of those are going to go ASD under the new criteria. Does he have language issues? The people I know personally who fit that profile were told earlier they had reading disabilities, but they sorta did and sorta didn't fit a dyslexia profile. I'm not sure there's a reason to think that instead of just using current DSM terminology and ASD. But you know, see where he's at. It's a really unique profile, that's for sure. It shows up in those social communication profiles, so see what you think after you read those and report back. 

 

It's not the first time I learned an overdue lesson from television! 

NVLD, I'm not that clear on, I do think DS is more ASD. I used to say "he makes eye contact and isn't shy so he can't be ASD," but I understand better now that isn't at all true. 

 

Thanks for the recs, off to study! 

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7 hours ago, Runningmom80 said:

This is the advice my own therapist gave me which also led to me not seeking it out. But I will say this was a few years ago, before puberty and before there were things that he's just not outgrowing. KWIM? 

yes, so youll know the right time. coronamess sigh

7 hours ago, Runningmom80 said:

I understand better now that isn't at all true. 

bingo.

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So, my youngest had a bunch of evaluations over the years, and always passed them.  Then finally a therapist was like, "You know she has ASD, right?"  And I was like, "I've been saying that since she was two, but all the experts said no."  And he said the evaluations honestly didn't matter much, and went through the DSM criteria, and we were all like, "Well, yeah."  And boom.  So it's possible that your son would pass the ADOS and stuff but still have it.  

Honestly, we're at a pretty sweet spot, where she's doing pretty awesome, but she's too young to do driver's training or get a job.  At this exact moment in time, I feel pretty good about long term prospects.  I mean, she's got issues, but I have fewer concerns about her long term future than I do about my older kid, whose diagnosis is "just" anxiety.  

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5 minutes ago, Terabith said:

So, my youngest had a bunch of evaluations over the years, and always passed them.  Then finally a therapist was like, "You know she has ASD, right?"  And I was like, "I've been saying that since she was two, but all the experts said no."  And he said the evaluations honestly didn't matter much, and went through the DSM criteria, and we were all like, "Well, yeah."  And boom.  So it's possible that your son would pass the ADOS and stuff but still have it.  

Honestly, we're at a pretty sweet spot, where she's doing pretty awesome, but she's too young to do driver's training or get a job.  At this exact moment in time, I feel pretty good about long term prospects.  I mean, she's got issues, but I have fewer concerns about her long term future than I do about my older kid, whose diagnosis is "just" anxiety.  


this is a good point and the way my kids are it wouldn’t surprise me if this happened. 

i think he will be employable and “functioning” Overall, but I’m not sure about his social-emotional health. Maybe he is just fine being by himself, I just want to make sure I’m not overlooking something.
 

My ds has anxiety too and that is a beast in and of itself. 

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Yeah, anxiety is honestly harder to deal with than ASD here.  My younger one has pretty much learned to deal with it, and has also learned that they want a couple friends in whatever situation she's in, and she's willing to put up with imperfect people to get that.  My older one didn't have anxiety hit till age 15 and has had a harder time learning to cope with it and also constantly lets the perfect be the enemy of the good and desperately wants friends but nobody measures up.  

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Just now, Terabith said:

Yeah, anxiety is honestly harder to deal with than ASD here.  My younger one has pretty much learned to deal with it, and has also learned that they want a couple friends in whatever situation she's in, and she's willing to put up with imperfect people to get that.  My older one didn't have anxiety hit till age 15 and has had a harder time learning to cope with it and also constantly lets the perfect be the enemy of the good and desperately wants friends but nobody measures up.  


this is how my son is! He’s into very specific things and talks AT us about them. He doesn’t really want anything to do with anyone who isn’t into his exact interests. 
 

He did have a friend at swim team, a sweet girl who was a little quirky herself, but he wasn’t into hanging out outside of practice or meets. 😞

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1 minute ago, Runningmom80 said:


this is how my son is! He’s into very specific things and talks AT us about them. He doesn’t really want anything to do with anyone who isn’t into his exact interests. 
 

He did have a friend at swim team, a sweet girl who was a little quirky herself, but he wasn’t into hanging out outside of practice or meets. 😞

Yeah, I've kinda wondered if Lyr might be on the spectrum, but since none of this was an issue until the anxiety hit at 15, I think probably not.  

Cat definitely has friends, and she does do things/ get together with them outside of activities, but not very often.  She needs a LOT of down time.  

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9 hours ago, PeterPan said:

introvert and extrovert spectrum definitely exist. the recovery from peopling can be very real. the catch is skills. if dont grow in skills, will retreat more, making cycle

 

His ped did a Myers briggs with him and he is at the very far end of the introvert spectrum.

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6 hours ago, HeighHo said:

Is he taking part in activities where he could meet other profoundly gifted people?  Not a necessity for friendship, but it is a help when the local friends are in an age//stage that is a poor match.

 

Not specifically. He's not DYS PG, as he missed their cut off by 2-3 points both times his IQ was tested. He qualified for CTY with his SAT score in the fall and we were looking into their summer programs before covid times. 

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Maybe socializing at swim team meets his social needs at the moment?  Even if he doesn’t take his relationships out of that context, they still count.  (Said as an Autistic girl who struggled to take friendships outside of the team/study group/office context, but even though she wanted to!)

I struggled to find friendships at his age. Part of it was definitely my undiagnosed autism, but I also found people with more common interests in college and grad school.  I think his willingness to take participate in structured social activities now bodes well for these future opportunities.  
https://www.spectrumnews.org/opinion/viewpoint/people-autism-path-friendship-may-start-high-school/

 

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1 hour ago, Lawyer&Mom said:

Maybe socializing at swim team meets his social needs at the moment?  Even if he doesn’t take his relationships out of that context, they still count.  (Said as an Autistic girl who struggled to take friendships outside of the team/study group/office context, but even though she wanted to!)

I struggled to find friendships at his age. Part of it was definitely my undiagnosed autism, but I also found people with more common interests in college and grad school.  I think his willingness to take participate in structured social activities now bodes well for these future opportunities.  
https://www.spectrumnews.org/opinion/viewpoint/people-autism-path-friendship-may-start-high-school/

 


thank you! This is encouraging. 😊

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On 7/19/2020 at 2:13 PM, Runningmom80 said:

This is the advice my own therapist gave me which also led to me not seeking it out. But I will say this was a few years ago, before puberty and before there were things that he's just not outgrowing. KWIM? 

This is good! Yes stuff like this, but he is pretty self aware. He says he knows he's awkward. He will even say "I didn't mean that I just wanted to make you mad, but it made me feel worse." I mean, my husband doesn't have that self awareness. 🤣.

I used to say "he makes eye contact and isn't shy so he can't be ASD," but I understand better now that isn't at all true. 

Tony Attwood books are good, IMO. For 2e gifted, Dierdre Lovecky's book is dry as dust, but I found it helpful.  https://www.amazon.com/Different-Minds-Children-Asperger-Syndrome/dp/1853029645

My DS who does qualify for DYS using the nonverbal score (a point or two shy on full scale IQ) is more self-aware than other people in my family that are NT or who have "only" ADHD. He does have an expressive language disorder, and his case, it means some very specific language holes while still killing it on the WISC in language, lol! He is more of hands-on kid, and while he enjoyed gifted enrichment for fun when he was a kid, he's planning to be a carpenter and is not academic at all now. SO MUCH is personality. He has friends, and he does tend to spend more time with them in structured environments, though that could change a bit once he drives. He can be awkward, but not super obviously so anymore--having his ADHD under control helps a great deal with this. 

3 hours ago, Runningmom80 said:

His ped did a Myers briggs with him and he is at the very far end of the introvert spectrum.

I am curious about the results. There is a snarky MB site that jokes about INTJs building their own friends, lol! (I am an INTJ, lol!) INTPs are also kind of picky about friends. 

3 hours ago, Runningmom80 said:

Not specifically. He's not DYS PG, as he missed their cut off by 2-3 points both times his IQ was tested. He qualified for CTY with his SAT score in the fall and we were looking into their summer programs before covid times. 

Close enough. +/- 2-3 points is probably well within the range of error.

2 hours ago, Lawyer&Mom said:

Maybe socializing at swim team meets his social needs at the moment?  Even if he doesn’t take his relationships out of that context, they still count.  (Said as an Autistic girl who struggled to take friendships outside of the team/study group/office context, but even though she wanted to!)

I struggled to find friendships at his age. Part of it was definitely my undiagnosed autism, but I also found people with more common interests in college and grad school.  I think his willingness to take participate in structured social activities now bodes well for these future opportunities.  
https://www.spectrumnews.org/opinion/viewpoint/people-autism-path-friendship-may-start-high-school/

Middle school stinks IMO. Many of the best friends I've ever had started in college or after becoming an adult. I wasn't very kid-like in many ways. (I don't have autism.)

Generally though, I am of the opinion that a diagnosis is helpful. 

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28 minutes ago, Florimell said:

Would you mind sharing his interests? I have a DS12.5 who, from your description, is a LOT like yours. If their interests align, maybe they could be e-mail pals?


sure! He’s super into retro video games, rebuilding old computers and music production. He mostly listens to Hip hop (this is a struggle but we have him freedom of music when he turned 13. He truly does listen for the beats. He likes to sample old songs or pull them apart and rearrange/reimagine them.)

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24 minutes ago, kbutton said:

Tony Attwood books are good, IMO. For 2e gifted, Dierdre Lovecky's book is dry as dust, but I found it helpful.  https://www.amazon.com/Different-Minds-Children-Asperger-Syndrome/dp/1853029645

My DS who does qualify for DYS using the nonverbal score (a point or two shy on full scale IQ) is more self-aware than other people in my family that are NT or who have "only" ADHD. He does have an expressive language disorder, and his case, it means some very specific language holes while still killing it on the WISC in language, lol! He is more of hands-on kid, and while he enjoyed gifted enrichment for fun when he was a kid, he's planning to be a carpenter and is not academic at all now. SO MUCH is personality. He has friends, and he does tend to spend more time with them in structured environments, though that could change a bit once he drives. He can be awkward, but not super obviously so anymore--having his ADHD under control helps a great deal with this. 

I am curious about the results. There is a snarky MB site that jokes about INTJs building their own friends, lol! (I am an INTJ, lol!) INTPs are also kind of picky about friends. 

Close enough. +/- 2-3 points is probably well within the range of error.

Middle school stinks IMO. Many of the best friends I've ever had started in college or after becoming an adult. I wasn't very kid-like in many ways. (I don't have autism.)

Generally though, I am of the opinion that a diagnosis is helpful. 


he is INTJ! (He was on the border between P&J but when we all read both of them he was for sure J)

 

ETA: thank you for the book recs!

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5 minutes ago, Runningmom80 said:


he is INTJ! (He was on the border between P&J but when we all read both of them he was for sure J)

 

ETA: thank you for the book recs!

He isn't going to like very many peers until his peers are adults, lol! Besides the straight meaning of P and J, INTPs tend to really rely on their T, and INTJs really rely on their N. I have a close relative that is and INTP, and we're an interesting combination of very alike/very different because of how we use N and T.

I do have friends; I am a friendly introvert at this point in life. I go through phases of being too open and then too closed with friendships, but I do have some really dear people that I can be myself with, and I have met four INTJs to boot, two of whom are women (that's like 1 in 500). One of the men is likely on the spectrum just a bit, but he's very successful and a pleasure to hang out with. Two of the INTJs I've met have very people-y jobs and a third does, but as a secondary part of the job--they have to work in downtime.

If he finds the right kind of work, he could really enjoy it and contribute substantially. I wasn't sure I was an INTJ when I was in college, nor did I like how negative all the descriptions were at that time (there are so many now that are a lot better). I had a LOT of strong SJ influences growing up that helped shape my values, so I was borderline on a couple of traits. When I got into my first job after college though, I realized I was quite naturally living all the INTJ traits at work and rockin' it. He'll grow into it! 

This site adds one more dimension to the traditional MB mix, and I found it really helpful. Some friends pointed me to this site, and I love the addition: https://www.16personalities.com/articles/identity-assertive-vs-turbulent 

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12 hours ago, kbutton said:

He isn't going to like very many peers until his peers are adults, lol! Besides the straight meaning of P and J, INTPs tend to really rely on their T, and INTJs really rely on their N. I have a close relative that is and INTP, and we're an interesting combination of very alike/very different because of how we use N and T.

I do have friends; I am a friendly introvert at this point in life. I go through phases of being too open and then too closed with friendships, but I do have some really dear people that I can be myself with, and I have met four INTJs to boot, two of whom are women (that's like 1 in 500). One of the men is likely on the spectrum just a bit, but he's very successful and a pleasure to hang out with. Two of the INTJs I've met have very people-y jobs and a third does, but as a secondary part of the job--they have to work in downtime.

If he finds the right kind of work, he could really enjoy it and contribute substantially. I wasn't sure I was an INTJ when I was in college, nor did I like how negative all the descriptions were at that time (there are so many now that are a lot better). I had a LOT of strong SJ influences growing up that helped shape my values, so I was borderline on a couple of traits. When I got into my first job after college though, I realized I was quite naturally living all the INTJ traits at work and rockin' it. He'll grow into it! 

This site adds one more dimension to the traditional MB mix, and I found it really helpful. Some friends pointed me to this site, and I love the addition: https://www.16personalities.com/articles/identity-assertive-vs-turbulent 

 

I love 16 personalities! I need to go back and really dig into his. Not that I believe that MB is the end all be all of getting to know a person, but there are definitely things that jump out as true and helpful. 

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6 minutes ago, Runningmom80 said:

I love 16 personalities! I need to go back and really dig into his. Not that I believe that MB is the end all be all of getting to know a person, but there are definitely things that jump out as true and helpful. 

I agree. I've found it more helpful than any other resource for learning about myself and other people. The college I went to had everyone take it, and they used it for learning opportunities about dorm relationships and in pre-marital mentoring, etc. It was a big help.

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