S/o Autism rates increasing and adults never diagnosed

[Ginevra]

I have been thinking about this for a few years now. If, diagnostically, we are now grouping a ton of difficulties, like ADHD, under Autism Spectrum Disorder, and we’re saying heaps of adults have issues, ways they are not quite normal, yet they were never diagnosed (which I agree to be true), where does that leave said adults? I mean, there’s a whole segment of adult society who have held down jobs, paid their taxes, remembered to call mom on her birthday and mostly remembered to change the oil in the car, yet who could fit the criteria for ASD if they (we) were growing up now. I’m wondering where that leaves them (us)? 

Couldn’t some of the issues we’re pinning on difficult mother-in-laws or clueless Heads of State, such as NPD, dovetail extremely well with high-functioning autism? So if you have a billionaire, who is good at making money and taking risks, but is stone-cold stupid about how to relate to other human beings, couldn’t we say this person is on the spectrum? 

Under the expanded criteria, I am probably diagnosable with HFA. Dh is probably diagnosable, too. He clearly has ADHD, a fact he pretty much recognizes as true, even though he was never diagnosed and won’t likely do anything about it. 

There are a couple of things I’m wondering about here. 

1) Are some of the characteristics we, as a society, have been looking upon as “crappy person” behavior really boiling down to ASD? 

2) Is there any point to diagnosis in adulthood? If yes, then what? If no, then why are we diagnosing half the population of kids? 

3) Most people, I think, have *something* not-quite-normal about themselves. But, I think maybe - so? There’s a lot of stuff we have to live with in our peeps. Are we saying all these differences should be treated or eliminated? 

Maybe I’m misunderstanding the exploding diagnoses. If 48% of New Jersey’s kids are diagnosed, would this be obvious to a “normal” person, if indeed there are any normal people left to assess? IME, it is very easy to armchair-diagnose other kids as being on the spectrum. So, I’m wondering if a classroom full of NJ kids would lead me to go, “wow, yup, that kid is on the spectrum, and that one, and that one...half these kids are on the spectrum!” Or if it is more like, “that kid always forgets his homework and that one cannot get along with any kid sitting behind him and that one couldn’t sit still if you taped his ass to the chair...” The later scenario seems to me like how it has always been, just without the diagnoses. 

I think I’m just wondering how this all pans out if half of a population of kids is diagnosed with ASD. Ironically, I also know a couple of kids who absolutely have ASD, but whose parents will NOT accept/believe it; they keep blaming behaviors on food allergies or inadequate sleep or whatever. 

[Chris in VA]

To your second question, I've found, as a person on the spectrum, a great deal of comfort in knowing I have ASD. I can now look at remediations for certain difficulties I have. I can stop beating myself up for talking too much, for example, and start working on it. Also, it helps to have an explanation for my quirks and oddities.  And there's a feeling, somewhat, of solidarity w other Aspies. 

[historically accurate]

I'm pretty sure I'd be diagnosed as would my brother and my cousin if we were growing up today. Of the 3 of us, only 1 is employed - my cousin has an at-home coding job. I dropped out to raise kids. My brother has been unemployed or underemployed for 15-20 years. My mom has some autistic traits, and I really wonder about my grandmother. 

As for why to diagnose as an adult, I've been contemplating it partly to show a family history. I have 2 kids that may qualify (1 is pretty stereotypical HFA girl-style; the other has some traits and some others that aren't). Both deal with anxiety (as I did when I was younger, and as my brother still does). Without the family history and so far no one has been diagnosed, insurance won't pay for genetic testing, but it's pretty obvious that a "lighter version" runs through my mom's family. 

[Guest]

3 minutes ago, Arctic Mama said:

Which heads of state do we think might be autistic?  The current one doesn’t really fit that diagnosis in any way I’ve seen it manifested.

If half the population ended up diagnosed with autism it has lost all meaning.  My friend’s severely autistic son, with low tone, stimming, major language and motor delays, and barely able to hold a job without significant assistance is just not in the same category of diagnostic criteria as what it seems to be expanding to.  They need to adjust the diagnostic criteria to be more precise, rather than more encompassing. It’s tricky because you have so many things that overlap or looks autistic, but might be better described under the umbrella of other etiology or conditions.  We do see that locally, and it makes getting needs taken seriously tough when people are now starting to ignore autism as a factor because it’s become fashionable to diagnose - that actually hurts the more severely affected and their access to help.

It’s like everyone claiming they are gluten intolerant and how challenging that can be for celiacs, because you get everyone and their mother using the label without necessarily having the severe effects. It causes this weird situational blindness where the whole thing becomes cavalier or background noise.

I don’t know, I’ve seen it. It’s hard to describe how and why it is damaging, especially when it can also help kids access services they may need.  But come adulthood, the line seems to be functional - if you’re getting by well enough, it’s probably not worth seeking a diagnosis at that point.  I guess I view diagnoses in terms of accessing help and assistance, as a tool for dealing with society and the medical profession, more than any sort of intrinsic identifier.  Clear as mud?

This is pretty much exactly what I mean. There are kids with ASD which nobody would deny; they cannot function “normally” for a multitude of reasons. But then there’s this much larger group of people who can function normally, though they may have their oddities here and there. They may, in fact, be on the spectrum, but is this even meaningful? 

The “heads of state” thing: some say the current one shows signs of NPD. I have also heard language-based disorder because he makes linguistic mistakes common to people with that problem; ie., choosing the incorrect word, repeating a small repertoire of the same words. There’s more, but I don’t intend to talk about him and mess up this thread with politics. I just meant it’s easy for me to see overlap of ASD with NPD. If you have a limited theory of mind, it is easy to be a narcisist. 

[shawthorne44]

 

Not Autism, but I read an article that said that at one time having some people with borderline personality disorders would have been a benefit to the tribe.  They could fill niche functions that required extreme attention to detail or extreme aggression, etc..  

I bring that up because I once talked to someone at a conference that was giving a talk on "The Benefits of Aspergers."   I couldn't go to the talk, but I asked her about it.   She said that once the focus was on work, it was a benefit to the employer and her career.   One thing interesting with her, I asked her if her diagnosis might not be a mild one.   That the reason I asked was because she hadn't said anything crappy yet, and that contradicted my experience.   She said that it was severe with her, and that she had no filter, but that she just didn't have any crappy thoughts to filter.  She compared to when some people get old and lose their filters.  Some of them turn mean, and some just say funny things sometimes.  

I don't know if I believe the diagnosis rates.  Don't we all know many people that the schools tried to get the diagnosis on their kids just to zombie-fy them?  I've heard that this is a problem for kids wanting to join the military.  A couple of years of the drugs in childhood disqualifies.  

 

[PeterPan]

7 minutes ago, Quill said:

I mean, there’s a whole segment of adult society who have held down jobs, paid their taxes, remembered to call mom on her birthday and mostly remembered to change the oil in the car, yet who could fit the criteria for ASD if they (we) were growing up now.

I'm not sure you're grasping the "significance" part of the criteria. If you're doing all those things, you aren't probably diagnosable.

I don't know you (beyond what I've seen online) so I'm not trying to say something about you personally. Just saying significance is part of the criteria.

I saw a quote/comment from Temple Grandin about making it so wide that sort of numbs people to the significance of what's going on in people who are significantly affected. If you look at the criteria, by definition the people should require SUPPORT across a variety of settings and the symptoms should be having SIGNIFICANT effect. ASD now begins with level 1 support. There is not a level of ASD that does not require support.

17 minutes ago, Quill said:

1) Are some of the characteristics we, as a society, have been looking upon as “crappy person” behavior really boiling down to ASD? 

The nicest people I know right now are on the spectrum. Well that's not true, I know someone who is NT and very nice. But really, the crappy people I know are just crappy people. The higher functioning (high IQ, seemingly mainstreamed) ASD people I know, one don't function ANYWHERE outside of their perseverative interests, and two are exceptionally nice people.

18 minutes ago, Quill said:

2) Is there any point to diagnosis in adulthood? If yes, then what?

The psych will ask what DIFFERENCE it will make and may decline to diagnose if it won't make a difference. 

19 minutes ago, Quill said:

If no, then why are we diagnosing half the population of kids?

Money. Kids are diagnosed to get coverage for support. There are a sliver of kids with ASD who manage to mainstream (your ASD 1 level of support, where kids might not be given an IEP), but for all kids 2 and 3 they need significant or very high support. That takes money. The likelihood of my ds holding a full-time job is NILL. He will require some level of support his entire life, even with his IQ, even with everything I can make happen. 

There's also no difference in employment for kids with a level 1 support. Their numbers are still that 80+% will be under-employed. IQ doesn't matter. 

Remember, there is also the new SCD and the option for social delay with ADHD. We do not have to say that every single person who happens to have social thinking deficits is now on the spectrum. We have research that the areas of the brain affected, whether they call it ADHD with social delay or ASD are the same, yes. But still they distinguish them clinically. 

I think ASD is the new sexy. I think a lot of people could easily go ADHD with a social delay. But who wants to say that about themselves? 

25 minutes ago, Quill said:

3) Most people, I think, have *something* not-quite-normal about themselves.

Have you seen Barry Prizant's work on this? He explores the idea that autism features are normal human traits, but that it's the combination that pushes you to the diagnosis. But no, to look at a person and say they have a repetitive behavior or stim or this or that, that's not surprising. It's not the ABSENCE of these traits that defines NT.

27 minutes ago, Quill said:

If 48% of New Jersey’s kids are diagnosed, would this be obvious to a “normal” person

I haven't read the other thread. NJ is such a mess (politically, just from what I see in the news), I don't know that I'd take any stat from there at face value. Diagnoses in childhood are partly given to get FUNDING. So a psych will put an ASD3 level, not as a statement of severity or final outcome, but as a statement that the dc needs a certain amount of ABA and needs the funding. There are studies exploring what percentage of kids given educational diagnoses of ASD will go on to get medical ones. The stats are reasonably good, maybe 80%, but again it was funding.

What to me is more telling is whether we are seeing an increase in people qualifying under county disability funding. THAT would be really telling, as THOSE criteria have not changed. County funding is pretty stringent and requires 3-4 areas of life to be affected and requires re-evaluation every 3 years to see if the dc CONTINUES to meet those criteria. So that would weed out your people, as you say, who are this or that (social delay, etc.) but functioning well. My ds continues to qualify under county disability funding, and this is NOT something a parent is happy about. Like no one is happy getting an ASD diagnosis, but I guarantee you no one whose dc ALSO qualifies under county funding is doing a happy dance. Maybe for the funding, but not on the mom level. It's heartbreaking because of what it really means. Like thank you for the extra $600 a year for services and the help with my gym membership and the option for a medicaid waiver, but I wish my ds didn't qualify. 

33 minutes ago, Quill said:

I also know a couple of kids who absolutely have ASD, but whose parents will NOT accept/believe it

Kind of interesting to ponder how accurate the stats are if you know so few kids with ASD. Like think about it, how many kids do you know? Why aren't 50% or even 25% of them showing ASD? Obviously there are more factors (the people dealing with ASD aren't making it to these groups, etc.), but still it's interesting to ponder. 

Currently our genetics knowledge and APPLICATION is lagging behind, so we're really not able to deal with these issues with clarity. I think in the next few years (10-50) there will be enough data to sort things out better. We have issues like FLK (funny looking kid) where kids have visible defects but are not diagnosed with anything. There's no homogeneity in the ASD population anyway. There are 82 types currently identified genetically. I think genetics are the better way to sort out the question you're asking. If you read more on the DSM, it's a terribly flawed concept, looking at superficial traits, never root biological/genetic causes, and trying to treat people based on symptoms. It's utterly absurd, and it's going to take time to sort it out. There are studies working on it and data banks like the SPARK study where people who are diagnosed can input data and let the researchers sort it out. 

[lavender's green]

Just an anecdote - I know a young adult female with autism, and one day the thought popped into my head that, wow, if she reproduces she could potentially be the monster-in-law from Hell. Not because she has any meanness in her, not at all. She just comes off as judgmental and disapproving, because she doesn't know how to modify her facial features, laugh at the right time, or stop staring with a stony expression on her face. I believe that she doesn't have a judgmental bone in her body. Her brain just doesn't function that way. Once in a while she'll say judgey things, but she's just repeating what she's heard from her parents and teachers. Couple that with the fact that her obsessions is babies, and I can just see her stealing the newest grandbabies to cuddle, totally ignore the older ones, laugh at her DIL's jokes in a way that comes across as bored, and stare at her in a way that seems to say "I hate you and your parenting abilities." When really she's just being herself and she's worked very hard to get as far as she has.

Which reminds me, one of our assistant preschool teachers is just like that. My kids don't like her. Even at the age of 3, my daughter can sense that something is off, and can't connect with her. And it's sad because she really, really likes them, and she's gainfully employed doing what she loves to do. I know she has adult children.

Which is all to say, sometimes when I hear MIL stories, depending on the details, I wonder if ASD is behind it, and the poor MIL is just doing the best she can with what nature gave her.

[Innisfree]

From the article quoted in the other thread:

Quote

The study found the rate increased 43 percent from 2010 to 2014 in the state.

I'm not sure where the 48% number came from, but

Quote

If 48% of New Jersey’s kids arediagnosed,

that's not at all what that article said.

I have a lot I could say on this subject, but not much time atm. Suffice it to say that the adults I know diagnosed recently have not been living life unimpaired. The one I know best is decidedly eccentric, and underemployed for decades despite an advanced degree and Phi Beta Kappa. Functional -- yes. But also impaired in important areas of life.

[Guest]

Quote

Kind of interesting to ponder how accurate the stats are if you know so few kids with ASD. Like think about it, how many kids do you know? Why aren't 50% or even 25% of them showing ASD? Obviously there are more factors (the people dealing with ASD aren't making it to these groups, etc.), but still it's interesting to ponder. 

Well, that is part of why this is something I’m thinking about. I know a small number of kids with profound, undeniable autism - classic presentations, possibly non-verbal, stim behavior, vocal tics, the whole nine yards. This is maybe 3-5 kids whom I specifically know right now. Then there is a bigger category of very noticeably atypical, yet mainstreamed, kids. Some have parents who readily discuss their kid’s diagnosis, some have parents who outright will not use the diagnosis. These are kids who have a range of “not-normal” behaviors. These are kids who are often homeschooled becaause the homeschool community is (at least) less likely to outright bully/shun these “weird” kids. I would say I know maybe 10-15 kids in this category. But you are right in that, even including these kids, that is less than 10% of our homeschool community’s children. Maybe less than 5%. 

[PeterPan]

1 minute ago, lavender's green said:

Couple that with the fact that her obsessions is babies,

Actually this is a really huge issue, how to handle the natural desire ALL people have for love, for companionship, for affection, and the reality that reproduction occurs in many people despite their DSM diagnosis. Attwood has done some writing on it, and it's something people in the field have a lot of conferences talks about. 

[Crimson Wife]

Narcissists are superficially very charming. They are excellent at manipulating people's emotions to get the other people to do what the narcissist wants.. Someone who is manipulative like that has to be very good at reading the other people's emotions.

People with HFA struggle with interpersonal interactions and typically others find them awkward. They struggle with "theory of mind" and recognizing how other people are feeling.

Very, very different disorders.

[Guest]

3 minutes ago, Innisfree said:

From the article quoted in the other thread:

I'm not sure where the 48% number came from, but

that's not at all what that article said.

I have a lot I could say on this subject, but not much time atm. Suffice it to say that the adults I know diagnosed recently have not been living life unimpaired. The one I know best is decidedly eccentric, and underemployed for decades despite an advanced degree and Phi Beta Kappa. Functional -- yes. But also impaired in important areas of life.

I am sorry; that was my haste. I wrote it wrong. 

I hope you get to discuss this later when you have more time. 

[Arcadia]

1 hour ago, Quill said:

Maybe I’m misunderstanding the exploding diagnoses. If 48% of New Jersey’s kids are diagnosed, would this be obvious to a “normal” person, if indeed there are any normal people left to assess?

 

It is 3% not 48%.

“The study found the rate increased 43 percent from 2010 to 2014 in the state.

The report, released April 11, found that about one in 59 children has autism. New Jersey's rate was the highest of the states studied: one in 35. That puts the national rate of autism at 1.7 percent of the childhood population and New Jersey's autism rate at 3 percent”

[lavender's green]

21 minutes ago, PeterPan said:

 

Have you seen Barry Prizant's work on this? He explores the idea that autism features are normal human traits, but that it's the combination that pushes you to the diagnosis. But no, to look at a person and say they have a repetitive behavior or stim or this or that, that's not surprising. It's not the ABSENCE of these traits that defines NT.

 

Thanks for the recommendation. I've often thought that my son (and his brother, who according to teachers is showing yellow flags for autism) has a lot of normal human traits. It's the combination (and sometimes the extremity) that pushes it into diagnosable territory.

The ADHD with social delay is interesting. Now that my kid is in school, the areas where he needs support seem to point more toward attention issues.

[PeterPan]

1 hour ago, Quill said:

I know a small number of kids with profound, undeniable autism - classic presentations,

I just wanna play with your mind a bit and say my ds' ADOS scores put him in the range for classic, Kanner autism, but you would not *necessarily* know it to meet him. Well I'm delusional too, lol. Every time I meet a parent whose kid is diagnosed ASD2 and they're like "yeah, but you wouldn't know it to meet my kid" I'm like yeah right, SO obvious. So who knows? At the very least, I'll say he doesn't fit the picture you have in your mind.

 

1 hour ago, Crimson Wife said:

Narcissists are superficially very charming. They are excellent at manipulating people's emotions to get the other people to do what the narcissist wants.. Someone who is manipulative like that has to be very good at reading the other people's emotions.

People with HFA struggle with interpersonal interactions and typically others find them awkward. They struggle with "theory of mind" and recognizing how other people are feeling.

Very, very different disorders.

Thank you.

Edited April 14, 2019 by PeterPan

[PeterPan]

3 minutes ago, lavender's green said:

Thanks for the recommendation. I've often thought that my son (and his brother, who according to teachers is showing yellow flags for autism) has a lot of normal human traits. It's the combination (and sometimes the extremity) that pushes it into diagnosable territory.

The ADHD with social delay is interesting. Now that my kid is in school, the areas where he needs support seem to point more toward attention issues.

This article on social communication profiles developed by Michelle Garcia Winner could also be helpful to you. Quill might find it interesting. Sort of cuts through the DSM stupidity and looks at what support the person actually needs to function, what kind of interventions benefit them, and how it tends to pan out over the long run. By the time a dc is about 8 that profile is usually pretty fixed, if you believe MGW. 

https://www.socialthinking.com/Articles?name=Social Thinking Social Communication Profile

[Guest]

Quote

 just wanna play with your mind a bit and say my ds' ADOS scores put him in the range for classic, Kanner autism, but you would not *necessarily* know it to meet him. Well I'm delusional too, lol. Every time I meet a parent whose kid is diagnosed ASD2 and they're like "yeah, but you wouldn't know it to meet my kid" I'm like yeah right, SO obvious. So who knows? 

Yeah, who knows? But then I wonder about myself, too. I mean I have always been kinda different. My friend whose son has HFA remarked about something I did as a child (read every book in the library on dogs) as “asperberger’s-like”. Then too, when I first met her kid, in my head I was thinking, “he has high-functioning autism.” I thought this was already an established fact we weren’t talking about but I knew them for over a year before her son was diagnosed. So yeah. It’s easy to see things sometimes as an outsider but it can be hard to see what’s right in front of your face. 

[Janeway]

1 hour ago, Quill said:

I have been thinking about this for a few years now. If, diagnostically, we are now grouping a ton of difficulties, like ADHD, under Autism Spectrum Disorder, and we’re saying heaps of adults have issues, ways they are not quite normal, yet they were never diagnosed (which I agree to be true), where does that leave said adults? I mean, there’s a whole segment of adult society who have held down jobs, paid their taxes, remembered to call mom on her birthday and mostly remembered to change the oil in the car, yet who could fit the criteria for ASD if they (we) were growing up now. I’m wondering where that leaves them (us)? 

Couldn’t some of the issues we’re pinning on difficult mother-in-laws or clueless Heads of State, such as NPD, dovetail extremely well with high-functioning autism? So if you have a billionaire, who is good at making money and taking risks, but is stone-cold stupid about how to relate to other human beings, couldn’t we say this person is on the spectrum? 

Under the expanded criteria, I am probably diagnosable with HFA. Dh is probably diagnosable, too. He clearly has ADHD, a fact he pretty much recognizes as true, even though he was never diagnosed and won’t likely do anything about it. 

There are a couple of things I’m wondering about here. 

1) Are some of the characteristics we, as a society, have been looking upon as “crappy person” behavior really boiling down to ASD? 

2) Is there any point to diagnosis in adulthood? If yes, then what? If no, then why are we diagnosing half the population of kids? 

 3) Most people, I think, have *something* not-quite-normal about themselves. But, I think maybe - so? There’s a lot of stuff we have to live with in our peeps. Are we saying all these differences should be treated or eliminated? 

Maybe I’m misunderstanding the exploding diagnoses. If 48% of New Jersey’s kids are diagnosed, would this be obvious to a “normal” person, if indeed there are any normal people left to assess? IME, it is very easy to armchair-diagnose other kids as being on the spectrum. So, I’m wondering if a classroom full of NJ kids would lead me to go, “wow, yup, that kid is on the spectrum, and that one, and that one...half these kids are on the spectrum!” Or if it is more like, “that kid always forgets his homework and that one cannot get along with any kid sitting behind him and that one couldn’t sit still if you taped his ass to the chair...” The later scenario seems to me like how it has always been, just without the diagnoses. 

I think I’m just wondering how this all pans out if half of a population of kids is diagnosed with ASD. Ironically, I also know a couple of kids who absolutely have ASD, but whose parents will NOT accept/believe it; they keep blaming behaviors on food allergies or inadequate sleep or whatever. 

 

First..I am going to say....who says NT people are "normal" and people with ASD are "not normal?"

 

Or that having symptoms of ASD comes off as a "crappy person?"

 

The crappiest people I know don't have ASD or signs of it. People I have known with ASD tend to be kinder and look at things in a less judgmental way and more with an open mind. I am sure many people prior to recent generations have had ASD and gone undiagnosed. But that also beckons the question to if we are overdiagnosing or labeling something that doesn't need a label? In the "olden days" kids would be outside riding bikes, exploring, running and playing, climbing on playground equipment or up in trees. All that sensory input would reduce the affects of ASD. ASD is largely a sensory issue.

[Pawz4me]

I don't think I'm normally easily offended, and perhaps I'm feeling a bit sensitive this morning. But I'm finding some of the wording on this thread verging on offensive, not to mention ignorant.

DS20 is ASD-1. He is the least "crappy" person you'll probably ever meet. On the contrary, he tends to be very gentle and kind. The worst thing I've ever known him to do to anyone is ignore them (and that for only the rudest of rude people).

[PeterPan]

5 minutes ago, Quill said:

read every book in the library on dogs)

So then you raised dogs and only talked about dogs no matter what somebody came up to you trying to talk about and changed the conversation back to dogs if it strayed to cats and only wanted to watch tv shows and movies with dogs and could tell you encyclopedic knowledge about dogs...

It's not shocking that a bright human being is interested in something. Personally, if you're looking at your own history and wanting to explore, I would look for what DIDN'T go well, not what did.

[BooksandBoys]

9 minutes ago, Crimson Wife said:

Narcissists are superficially very charming. They are excellent at manipulating people's emotions to get the other people to do what the narcissist wants.. Someone who is manipulative like that has to be very good at reading the other people's emotions.

People with HFA struggle with interpersonal interactions and typically others find them awkward. They struggle with "theory of mind" and recognizing how other people are feeling.

Very, very different disorders.

Yes. 

ASD is all through one side of my children’s family. A great-uncle, an uncle, likely their father, maybe their grandfather (at least severe adhd) and, if I’m correct, their grandmother and great-grandmother). It explains so much about the challenges all of these people have in their relationships, school, their jobs, their relationships (oh, I said that already :-). 

The narcissism thing, though. It’s interesting to me. Because, if you don’t know what autism is, but you’ve heard of narcissism, I think it can look a little like narcissism. Bear with me. Consider the idea that people with HFA struggle with theory of mind and seeing the perspective of other people and consider how that could look like narcisism to someone who doesn’t understand autism. 

I wish we could diagnose more adults. I wish more adults were open to diagnosis. Because the adults in our own lives would still benefit from supports in some aspects of their lives. I’m not saying this well. My DH is slowly considering the idea that he is on the spectrum (he decided his brother and uncle were many years ago). But, what I’m not seeing yet are the skilled job counselors for adult HFAs and the marriage counselors who understand adult HFA. And, just straight up regular counselors who understand adult HFA. These exist, I’m sure, but I’d love to see it expand to actually be accessible. 

[PeterPan]

2 minutes ago, Pawz4me said:

I don't think I'm normally easily offended, and perhaps I'm feeling a bit sensitive this morning. But I'm finding some of the wording on this thread verging on offensive, not to mention ignorant.

DS20 is ASD-1. He is the least "crappy" person you'll probably ever meet. On the contrary, he tends to be very gentle and kind. The worst thing I've ever known him to do to anyone is ignore them (and that for only the rudest of rude people).

I'm with you. In this month of supposed "Autism Awareness" I suppose it really does just extend to blue lightbulbs.

[Arcadia]

7 minutes ago, PeterPan said:

This article on social communication profiles developed by Michelle Garcia Winner could also be helpful to you. Quill might find it interesting. Sort of cuts through the DSM stupidity and looks at what support the person actually needs to function, what kind of interventions benefit them, and how it tends to pan out over the long run. By the time a dc is about 8 that profile is usually pretty fixed, if you believe MGW. 

https://www.socialthinking.com/Articles?name=Social Thinking Social Communication Profile

 

DS13 behaves like a high functioning WISC and MGW is local to me. There are definitely improvements with maturity.

[Janeway]

1 hour ago, Quill said:

This is pretty much exactly what I mean. There are kids with ASD which nobody would deny; they cannot function “normally” for a multitude of reasons. But then there’s this much larger group of people who can function normally, though they may have their oddities here and there. They may, in fact, be on the spectrum, but is this even meaningful? 

The “heads of state” thing: some say the current one shows signs of NPD. I have also heard language-based disorder because he makes linguistic mistakes common to people with that problem; ie., choosing the incorrect word, repeating a small repertoire of the same words. There’s more, but I don’t intend to talk about him and mess up this thread with politics. I just meant it’s easy for me to see overlap of ASD with NPD. If you have a limited theory of mind, it is easy to be a narcisist. 

There is no overlap. People with ASD can hyperfocus on something, but not all do. They don't always pick up on social clues and often have high anxiety. They can find it difficult to understand or relate to someone else's interests  People with NPD, actual NPD and not just being called a narcissist, are harmful. They will hurt people to get what they want. They do pick up on social clues and use that to their advantage to harm others. People with NPD do not simply have a lack of interest or understanding of others. It is the complete opposite. They understand others and manipulate and seek to harm others. Completely not the same as ASD and there is no overlap at all.

Edited April 14, 2019 by Janeway

[PeterPan]

1 minute ago, BooksandBoys said:

the marriage counselors who understand adult HFA.

There are a few books on it.                                             22 Things a Woman with Asperger's Syndrome Wants Her Partner to Know                                     

[Pawz4me]

Quill, you might want to do some research on "broad (or broader) autism phenotype." It's the term used for people who have some autistic traits (which is many of us) but wouldn't qualify for an actual diagnosis.

[PeterPan]

3 minutes ago, Arcadia said:

 

DS13 behaves like a high functioning WISC and MGW is local to me. There are definitely improvements with maturity.

Improvements as in changing to a different category? I don't think the categories are perfect either, because my ds is one that you want to say is ESC but he leans into CSC. We've done the longer eval, and his scores on every measure are like this too. In his case, I think it's the IQ. Typically the CSC are going to have some effect on IQ as well. 

The document is most useful for realizing issues you should be noticing and seeing patterns. It also tackles some of the hard things like your more ODD type presentations and what the social thinking is. But yeah, WISC is the most fuzzy, the one where those kids could go any number of labels or have no label, depending on the day and the psych. 

[PeterPan]

9 minutes ago, BooksandBoys said:

And, just straight up regular counselors who understand adult HFA. These exist, I’m sure, but I’d love to see it expand to actually be accessible. 

Total, total aside, but the person I know who's best at this is a licensed social worker who works exclusively with ASD as a behaviorist. So there you've got the mental health training and counseling training paired with significant ASD experience. I don't think a "counselor" in an office is likely to be well-prepared, especially coming out of school. We went to one who was an utter idiot. He literally spent the whole time with his jaw on the floor. His stupid counseling training had not prepared him AT ALL, lol. We left, found somebody who had a phd, somebody who actually had experience with ASD. 

Now the better question then is whether the person with the social thinking deficits is ready to accept what that person might say. That's a whole other discussion and rabbit trail. 

[Guest]

12 minutes ago, Janeway said:

 

First..I am going to say....who says NT people are "normal" and people with ASD are "not normal?"

 

Or that having symptoms of ASD comes off as a "crappy person?"

 

The crappiest people I know don't have ASD or signs of it. People I have known with ASD tend to be kinder and look at things in a less judgmental way and more with an open mind. I am sure many people prior to recent generations have had ASD and gone undiagnosed. But that also beckons the question to if we are overdiagnosing or labeling something that doesn't need a label? In the "olden days" kids would be outside riding bikes, exploring, running and playing, climbing on playground equipment or up in trees. All that sensory input would reduce the affects of ASD. ASD is largely a sensory issue.

I’m saying is it possible to interpret someone as having bad behavior when they actually have ASD. Like the poster upthread talking about the young woman who doesn’t laugh appropriately at a joke or has her face in an expression someone could think was mean or bored. I have known kids on the autism spectrum whose behavior annoys others, for example, don’t give others personal space, don’t see how what they do affects others, annoys others with touchiness. 

I’m not saying having ASD means automatically crappy person. Geez. 

[Janeway]

3 minutes ago, Quill said:

I’m saying is it possible to interpret someone as having bad behavior when they actually have ASD. Like the poster upthread talking about the young woman who doesn’t laugh appropriately at a joke or has her face in an expression someone could think was mean or bored. I have known kids on the autism spectrum whose behavior annoys others, for example, don’t give others personal space, don’t see how what they do affects others, annoys others with touchiness. 

I’m not saying having ASD means automatically crappy person. Geez. 

I have never met a bully with ASD. I have met plenty of crappy people, none of whom have any signs of ASD. Someone not laughing at a joke or having an expression that someone else interprets as negative hardly qualifies as a crappy person. However, the person who gossips about or tears down someone or beats up someone who doesn't have the facial expression they wanted them to have..that is a crappy person. I see a lot of blame the kid with ASD going on on this thread. 

[Guest]

17 minutes ago, PeterPan said:

So then you raised dogs and only talked about dogs no matter what somebody came up to you trying to talk about and changed the conversation back to dogs if it strayed to cats and only wanted to watch tv shows and movies with dogs and could tell you encyclopedic knowledge about dogs...

It's not shocking that a bright human being is interested in something. Personally, if you're looking at your own history and wanting to explore, I would look for what DIDN'T go well, not what did.

Well, that would take a while...😄

I did have encyclopedic knowledge about dogs, though. I probably did confuse a lot of kids because when I was fixated on something, there was no talking about a different subject. I’m sure I was an annoying know-it-all. 

I might still be. 

[PeterPan]

1 hour ago, Quill said:

1) Are some of the characteristics we, as a society, have been looking upon as “crappy person” behavior really boiling down to ASD? 

In context, you were talking about adults here. 

5 minutes ago, Quill said:

I have known kids on the autism spectrum whose behavior annoys others

Maybe what you'd like to do next is try to meet personally some adults on the spectrum? 

[shawthorne44]

38 minutes ago, lavender's green said:

Just an anecdote - I know a young adult female with autism, and one day the thought popped into my head that, wow, if she reproduces she could potentially be the monster-in-law from Hell. Not because she has any meanness in her, not at all. She just comes off as judgmental and disapproving, because she doesn't know how to modify her facial features, laugh at the right time, or stop staring with a stony expression on her face. I believe that she doesn't have a judgmental bone in her body. Her brain just doesn't function that way. Once in a while she'll say judgey things, but she's just repeating what she's heard from her parents and teachers. Couple that with the fact that her obsessions is babies, and I can just see her stealing the newest grandbabies to cuddle, totally ignore the older ones, laugh at her DIL's jokes in a way that comes across as bored, and stare at her in a way that seems to say "I hate you and your parenting abilities." When really she's just being herself and she's worked very hard to get as far as she has.

Which reminds me, one of our assistant preschool teachers is just like that. My kids don't like her. Even at the age of 3, my daughter can sense that something is off, and can't connect with her. And it's sad because she really, really likes them, and she's gainfully employed doing what she loves to do. I know she has adult children.

Which is all to say, sometimes when I hear MIL stories, depending on the details, I wonder if ASD is behind it, and the poor MIL is just doing the best she can with what nature gave her.

I wonder if right there might be a reason a diagnosis can help an adult.   Imagine that same MIL, that had a diagnosis and accepted it.   The MIL could come clean with the DIL and have a frank discussion.   

Years ago, DD was failure to thrive. I was taking her to Children's Medical for a bunch of tests, some of them scary.   DH was in denial so I wanted to always be the one to take DD.  I had a boss at the time that would act interested in hearing about it.  But, then a month later she would have completely forgotten that anything was going on with DD medically.   I could understand her not remembering the details, but I thought that her interest must have been completely fake since she couldn't even remember that Something was going on.   We had some friction over that.   Then one day things came to a head.  Turns out, she'd had a brain injury and had trouble remembering things.   She did things like always communicate through e-mail.   If she had just mentioned something, we wouldn't have had that friction.  Fortunately, we had that discussion because she died shortly after.  

[City Mouse]

My DD was not diagnosed until she was an adult, although I did have my suspicions for many years. 

I think the biggest benefit to the diagnosis as an adult is to help her (and her parents) understand why she is the way she is, and to readjust our expectations for the future. 

I do see traits in at least two of my siblings that lead my to think that they may have autism, but I do not know if either one has every had an official diagnosis. 

[PeterPan]

2 minutes ago, shawthorne44 said:

 Imagine that same MIL, that had a diagnosis and accepted it.   The MIL could come clean with the DIL and have a frank discussion.   

I don't think disclosing TBI and a mental health diagnosis are the same. If you disclose a mental health diagnosis, you are subject to the inaccuracies, misconceptions, assumptions, stupidity, ignorance, bias, and downright UNKIND CONSEQUENCES of people in how they interpret it and use that information. It's not quite as straightforward as oh I had TBI and now you understand and will treat me appropriately. IT DOESN'T WORK THAT WAY. 

[Guest]

1 minute ago, Janeway said:

I have never met a bully with ASD. I have met plenty of crappy people, none of whom have any signs of ASD. Someone not laughing at a joke or having an expression that someone else interprets as negative hardly qualifies as a crappy person. However, the person who gossips about or tears down someone or beats up someone who doesn't have the facial expression they wanted them to have..that is a crappy person. I see a lot of blame the kid with ASD going on on this thread. 

That’s not what I’m doing. For pity’s sake. 

Okay, here’s a kid, let’s call him Jake. Jake is in my class at homeschool co-op, say. Other kids find Jake annoying. When we do pair-up activities, only the most compassionate, mature girl will pair up with Jake, because she doesn’t want him left for last with no partner. Jake isn’t good at the activity. He is impulsive and does a poor job. He is loud and moves around excessively. He melts down a few times in a semester. He’s not mean per se, but his social awareness is deficient and it makes him hard to like. 

I literally just had to explain to some kids in my class at co-op to try and have some forbearanc for “Jake,” because Jake has some special needs and he doesn’t mean to be annoying. 

*For my purposes, Jake is a composite student. There is no one child like Jake, but in the fifteen years at co-op, I have had a lot of Jake-like experiences. 

[Guest]

8 minutes ago, PeterPan said:

In context, you were talking about adults here. 

Maybe what you'd like to do next is try to meet personally some adults on the spectrum? 

I might live with one. 

[Arcadia]

22 minutes ago, PeterPan said:

Improvements as in changing to a different category? 

 

At around 8, he was able to tell the cause and effect part of social nuances. Like he knows his classmate is upset/annoyed and why that classmate feels that way. However his reaction is inappropriate in that he further infuriate the classmate. So he was the one not invited to participate in recess time games.

At about 10, you could see that he is able to stop himself from being an ass by understanding that someone being upset/annoyed means he should stop his hurting/annoying behavior. He kind of acquired tact at that stage as well. He was grasping the emotional aspect of “If you have nothing good to say, stay silent” 

At around 12 when his major growth spurt started, you could see that it’s no longer tact but that his empathy skills are catching up to age peers. Now he is as empathetic as a “typical” teen. DS14 has always been very empathetic since he was very little, so not what I am comparing to. 

ETA:

Kind of like he use his mental skills to cope until his emotional skills caught up. 

Edited April 14, 2019 by Arcadia

[EKS]

Maybe someone else has already clarified this, but a 48% increase in diagnoses means that if 2 in 100 people are diagnosed with something, after the 48% increase, 3 in 100 people will be diagnosed.  

That said, I think that in order to be diagnosed with something like ASD, a person cannot just be quirky, they need to actually be disabled, meaning that they need to have significant impairment in their daily life.  My son was erroneously diagnosed with Asperger's 13 years ago because the evaluator was focused on quirky.  If you look at the rest of his developmental arc, it is blatantly obvious that he is nowhere on the spectrum and never has been.  

[PeterPan]

1 minute ago, Quill said:

He’s not mean per se, but his social awareness is deficient and it makes him hard to like. 

Hard to like or hard to be around? A lot of people with ASD are very friendly, wanting relationships, even if their behaviors are off-putting. You've never met a friendlier bunch than if you go into an ASD school. Stress someone out in an environment that is not appropriately supportive, and no they're not going to be their best. 

I think that not liking could mean not understanding. In fact, someone on the spectrum just wisely said that to me, that people criticize what they don't understand. And if you don't understand, maybe your brain doesn't think like theirs. I am not talking about a volitional act, understanding or not wanting to understand, but that ASD minds speak to ASD minds and people "get" each other sometimes. They meet and go wow, you think the way I do. And it's not really about levels, because I've seen it happen across labels.

[Pawz4me]

1 minute ago, Quill said:

That’s not what I’m doing. For pity’s sake. 

Okay, here’s a kid, let’s call him Jake. Jake is in my class at homeschool co-op, say. Other kids find Jake annoying. When we do pair-up activities, only the most compassionate, mature girl will pair up with Jake, because she doesn’t want him left for last with no partner. Jake isn’t good at the activity. He is impulsive and does a poor job. He is loud and moves around excessively. He melts down a few times in a semester. He’s not mean per se, but his social awareness is deficient and it makes him hard to like. 

I literally just had to explain to some kids in my class at co-op to try and have some forbearanc for “Jake,” because Jake has some special needs and he doesn’t mean to be annoying. 

*For my purposes, Jake is a composite student. There is no one child like Jake, but in the fifteen years at co-op, I have had a lot of Jake-like experiences. 

I think you'd be much better off concentrating on/brainstorming how to deal with Jake's specific behaviors than in labeling them as ASD and making broad generalizations about those on the spectrum.  There is a common and very true saying that "if you've met one autistic person then you've met one autistic person." Because it very much is a spectrum. DS20 is definitely on that spectrum, but he is nothing at all like your Jake. Quite the opposite. He's the "good," scarily intelligent kid who might be a little socially clueless and is uncoordinated as heck, but that every other kid in the class wants in their group because he's focused (he'll get the project done by himself if he has to) and because of that scarily intelligent thing. My nephew is a high school math teacher and says the best kid he has this year is on the spectrum. Not necessarily because he gets the math (although IIRC nephew says he does), but because he behaves in class, does his homework, etc.

[PeterPan]

10 minutes ago, Arcadia said:

 

At around 8, he was able to tell the cause and effect part of social nuances. Like he knows his classmate is upset/annoyed and why that classmate feels that way. However his reaction is inappropriate in that he further infuriate the classmate. So he was the one not invited to participate in recess time games.

At about 10, you could see that he is able to stop himself from being an ass by understanding that someone being upset/annoyed means he should stop his hurting/annoying behavior. He kind of acquired tact at that stage as well. He was grasping the emotional aspect of “If you have nothing good to say, stay silent” 

At around 12 when his major growth spurt started, you could see that it’s no longer tact but that his empathy skills are catching up to age peers. Now he is as empathetic as a “typical” teen. DS14 has always been very empathetic since he was very little, so not what I am comparing to. 

ETA:

Kind of like he use his mental skills to cope until his emotional skills caught up. 

So that's all growth within the category? You're saying he still stayed in the WISC profile but matured and grew relative to himself? Or do you feel he's leaving the profile? I was just wondering. 

[Arcadia]

1 minute ago, PeterPan said:

So that's all growth within the category? You're saying he still stayed in the WISC profile but matured and grew relative to himself? Or do you feel he's leaving the profile? I was just wondering. 

 

He is still a “work in progress” but I no longer need to worry about him being “left out” or annoying/hurting others because he is as “irritating” as any of his classmates. He grew relative to himself so still in that profile but a lot more “high functioning” than when he was 8.

[PeterPan]

12 minutes ago, Quill said:

I might live with one. 

What do you want to DO about it? What change do you want to happen? The thing you can definitely be accurate about is social thinking deficits. Once you move on to DSM labels, that's just so variable. But if you want to look at the social communication profiles and say ok he's struggling with this aspect of social thinking, then that's something you can actually effect change on or raise awareness on. 

If he knows he has ADHD, his best bet is to begin daily mindfulness practices, a daily body scan (or even 3-4 times a day) and see what happens. There's a broad range from noticing to applying, and sometimes the bump the person gets with daily body scans (an evidence-based practice) could be enough to help him apply what he already knows to do. He might choose medication. But irrespective of label, some practice of mindfulness and body scans would be a logical starting point. Boosts executive function, interoception, decreases anxiety. 

What you'll find, as you read the profiles, is it really doesn't matter if his label is ADHD or ASD1 or the old pdd-nos or gifted or no label. The interventions are still the same, improving awareness, improving social thinking. They will clump them together clinically, the ADHD, ASD1, and undiagnosed. Unless it interests him, the label doesn't matter, only that he gets the intervention. 

You could give him the social communication profiles and ask HIM to self-assess and then compare it to how YOU assess. That would be interesting. 

[Arcadia]

13 minutes ago, PeterPan said:

So that's all growth within the category? You're saying he still stayed in the WISC profile but matured and grew relative to himself? Or do you feel he's leaving the profile? I was just wondering. 

 

His executive function skills make leaps along the same timeline as social skills. Neuroscience is just interesting and complicated. Most of my relative, including myself, do not check those pediatrician milestones checklists in a synchronous manner. We tend to be ahead some areas, behind some areas, and usually none that is smack exact. By mid 20s, we kind of catch up/even out. 

[Guest]

The reason for DX as an adult is validation that you are normal for you. In my case, I had multiple labels, but it was when I was evaluated in grad school that I found out that a couple of areas where I felt like I’d never lived up to expectation that I was actually doing better than expected given my testing profile.

 

In my brother’s case, he had multiple DX’s that never quite stuck. As an adult, when he started to work with clients with autism (he is a lawyer for the office of protection and advocacy, and works with clients with disabilities who end up in the criminal justice system to try to get them in an appropriate setting), and realized that he was probably HFA as opposed to MPD, ADHD, ADD-H. He’s never bothered to be tested, but the realization has made it easier for him to accept had some things are a struggle. 

14 minutes ago, PeterPan said:

What do you want to DO about it? What change do you want to happen? The thing you can definitely be accurate about is social thinking deficits. Once you move on to DSM labels, that's just so variable. But if you want to look at the social communication profiles and say ok he's struggling with this aspect of social thinking, then that's something you can actually effect change on or raise awareness on. 

If he knows he has ADHD, his best bet is to begin daily mindfulness practices, a daily body scan (or even 3-4 times a day) and see what happens. There's a broad range from noticing to applying, and sometimes the bump the person gets with daily body scans (an evidence-based practice) could be enough to help him apply what he already knows to do. He might choose medication. But irrespective of label, some practice of mindfulness and body scans would be a logical starting point. Boosts executive function, interoception, decreases anxiety. 

What you'll find, as you read the profiles, is it really doesn't matter if his label is ADHD or ASD1 or the old pdd-nos or gifted or no label. The interventions are still the same, improving awareness, improving social thinking. They will clump them together clinically, the ADHD, ASD1, and undiagnosed. Unless it interests him, the label doesn't matter, only that he gets the intervention. 

You could give him the social communication profiles and ask HIM to self-assess and then compare it to how YOU assess. That would be interesting. 

I’ve found this to be true. Labels matter less than what you do about them. 

[Lawyer&Mom]

Adult diagnosed Autistic here.  I’m married, employed, file my taxes on time.  Whatever.   All this functioning doesn’t mean I didn’t need a diagnosis.  Actually the opposite.  How could some one so functional struggle so much?  You don’t know how hard the high functioning Autistic is working behind the scenes.  You don’t see how they collapse *after* the meeting, the phone call, the coffee date.  My Autism diagnosis has also meant so much for me in allowing me to retroactively understand the acutely difficult periods in my life.  (That breakdown in college?  Actually really typical.)  So why a formal diagnosis?  There aren’t any services for me.  I really got it because the family member with a ASD-2 kid didn’t believe me when I said I was autistic.  Just because Autism is broader than you previously realized doesn’t mean it isn’t real, and doesn’t have significant consequences for even the highest functioning.

It really frustrates me that my existence somehow weakens the support for the “real” Autistics.  I don’t feel Neurotypical people face this same burden.  Neurotypical people are allowed to have a full range of functionality, and a full range of problems, and still be considered Neurotypical.  We’ve had neurotypical Presidents! Scientists! Novelists! *And* Neurotypical kids with severe intellectual disability who will never live independently.     

Autism has this same range, and that’s okay. 

[gardenmom5]

one question that needs to be asked - who is doing the diagnosing? 

their ped?  (they're NOT qualified.  My son's ped blew me off when I expressed concern.)

a single psychologist?  a psychologist who does this on a regular basis?

a team drawing from different disciplines who do this on a regular basis? (a team from the medical school, incl. psychologists, developmental peds, OT/PT's, SLP's - were all part of who diagnosed dudeling).

[Pen]

 

Quote

Maybe I’m misunderstanding the exploding diagnoses. If 48% of New Jersey’s kids are diagnosed, would this be obvious to a “normal” person, if indeed there are any normal people left to assess?

 

Yes. You are misunderstanding.

1) there was a 43% (or whatever) increase.  Total rate for the state (and that may actually have been measured in only certain places) is probably more around 3% ish.  

2) can’t speak to NJ, but I’m in Oregon which had a past distinction of having been called highest for ASD. Many kids have something very clearly severe ASD-like wrong .  It is truly very different than in my childhood or 20 years ago.  (ETA- some of these could be actually lead poisoning or actually vaccination injury and not “true autism” — but with essentially same manifestation)

3) there are places in world where everyone has river blindness.  

  Yes they are blind.  

That is a severe deficit compared to being sighted whether or not it is 100% or 50% or 4% who have the problem of blindness.  

4) rising rates beg the questions why and what can be done to prevent and treat it

ETA 5) analogizing to the blindness situation, I think less severe cases of poor eyesight might be worth diagnosing in adulthood as well as childhood because glasses or contact lenses might help.  Or the person could know to exercise extra caution in certain situations, or understand why baseball was especially hard.  I think that could be similar with someone with mild adult impairment of some sort.  There might be glasses etc equivalents.  

(probably this will have had others answer already as there were dings of new replies while I was writing.)

Edited April 14, 2019 by Pen

[Pawz4me]

22 minutes ago, Arctic Mama said:

Agree, but I think this gets back to the point that broadening the diagnoses doesn’t really help give understanding or meaning to the condition, or to helping and loving a person who happens to be autistic.

I don't know.

Maybe this is a bad comparison, but is it really much different from cancer? There's a massive amount of space between someone with Stage I cancer and someone with Stage IV. But we still call it cancer, and most of us understand the meaning and the differences.