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How accurate / fixed is an ASD diagnosis


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I'm not sure the subject title is the best, because I'm not sure exactly how to phrase my question. In a book he coauthored with Temple Grandin, Sean Barron talks about "overcoming" autism and uses other language suggesting that autism is more like excema - something that people can be more disposed to, but that can be dealt with using appropriate treatment and with appropriate help/support (my analogy that I came away with, not his!). Many others talk about autism as being something fixed: while there may be different degrees of it in different people, it's something that's hard-wired into you. Other times, I hear about folks whose autism diagnosis changed, and it's not clear to me if the diagnosis was incorrect to begin with or if the level of autism actually changed.

 

To be clear: I'm not talking about trying to "cure" someone's autism. Thank you! :)

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My 19 year old Aspie "passes" as quirky NT most of the time.  But his brain definitely sees things differently.  ASD is so much more than what is visible.  The "passing as NT" is more that he's learned to meltdown at home where it is safe or to use self-talk or other ways to regulate himself.  He knows how to navigate the world including social situations.  He's still odd at times but he has friends who embrace that or who just quietly roll their eyes at the odder things.  He has been involved in a very good Autism Spectrum program at his college which has given him some good insight in why he sees the world and sensory input etc. the way he does.  He also knows that he's not alone and has made some friends in the program.  He's actually "graduated" from the program after one quarter because they were focused on social skills and coping skills that he already has down but he knows that they are there for him if he ever needs it. 

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I think autism is a neurological condition that's always there. Now can most kids learn to cope better with the symptoms as they get older? Yes, I absolutely think so. And my guess is that's even more likely with most 2e kids. What I see in DS18 (who also "passes" very well most of the time) is that coping can take a pretty heavy toll. I think it's the major reason he needs so much down time.

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I'm way, way less autistic and dyspraxic (seeming) than when I was a kid. I can refrain from stimming in public, I don't walk into things, I know when to stop talking and how to engage without infodumping. I'm way better at mentally modeling other people's perspectives. But I'm probably never going to stop being really literal-minded, having trouble lying or dissembling even in minor matters, having trouble coping with multiple simultaneous streams of input/stimulus, being bizarrely good at mental arithmetic, stimming at home, or having an awkward, detached relationship with my physical environment and hating fussy feminine clothes. As I was undiagnosed and untreated my changes happened naturally or by conscious effort in response to social feedback. I do need a lot of downtime.

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This is a controversial topic. Research shows that about 20% of those with a normal underlying IQ who receive intensive early treatment will improve their functioning enough to no longer qualify for an ASD diagnosis. They are considered "optimal responders". Have they truly grown out of their autism? Or do they continue to face more subtle challenges that are simply less obvious than the ones they faced when they were younger. Here is an interesting article on the topic.

 

I'm of the opinion that ASD is a permanent neurological condition but that with intensive early treatment, the child's functioning level can be improved to the point where it no longer interferes significantly with the person's day-to-day life.

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This is a controversial topic. Research shows that about 20% of those with a normal underlying IQ who receive intensive early treatment will improve their functioning enough to no longer qualify for an ASD diagnosis. They are considered "optimal responders". Have they truly grown out of their autism? Or do they continue to face more subtle challenges that are simply less obvious than the ones they faced when they were younger. Here is an interesting article on the topic.

 

I'm of the opinion that ASD is a permanent neurological condition but that with intensive early treatment, the child's functioning level can be improved to the point where it no longer interferes significantly with the person's day-to-day life.

 

OK - I read that article.  But my ds still got an ASD diagnosis (that he believes is accurate) and never ever had a language delay (in fact he started talking at 8 months and never slowed down), never stimmed, never had trouble with eye contact, jokes (though his jokes can be a bit on the pedantic side), was never expressionless (in fact he can be emotionally over the top) etc.  I feel like they are looking at only one picture of ASD which focuses on overt symptoms.  Ds is still hyper sensitive to sensory stimuli but he can deal with a certain amount now until he can have some recovery time at home. 

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I am of the opinion that it remains life-long in terms of thinking patterns, need for more downtime to deal with life, etc. 

 

I think winterbaby describes a lot of what I see in people who are self-aware and have adjusted to the neurotypical world. 

 

My son with ASD has some pragmatic issues with language, but they are much better (he knows the right answers), but he has definite issues with expressive language...while also have amazing language scores. It's very hard to explain, nail-down, or find a test for, but it's a big difficulty. I think part of it is integrating abstract or complex thinking with language output. He has not had enough practice 1:1 with a full range of ideas to then start pairing them up and spitting them back out.

 

He is also 2e. 

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I think the thing is - when they diagnose levels, the "level" is the amount of support needed. So, if a person, for whatever reason, needs less support than they once did - then their level has changed. My son went from a level 2 to a level 1. It doesn't mean that his neurology has changed, it just means that some of the potential that was there from the very beginning has been brought out. I doubt that he will ever "lose his diagnosis" but if he did, it would simply mean that he's no longer meeting the diagnostic criteria for autism, and at that point, I think we really need to question if there is really much of a difference between a person who is "almost autistic" and one who is "barely autistic."

 

Because...I have another son - he's so high functioning that one doctor says he is on the spectrum, and another doctor says he's not. He's getting the help he needs, so it doesn't really matter either way, but that's sort of my point - these are all just technicalities to make sure appropriate services are in place. If the "level" of services needs to change, then so does the "level" of autism.

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I think that autism, when thought of as a characteristic of a person, a way of thinking, a way of relating to the world, does not go away.  Autistic children grow up to be autistic adults.

 

I think that autism, when thought of through a medical or education lens as a disability, can go away.  That is, I think that there are some people whose autism substantially impacts life activities as children, making it hard for them to communicate, or function in a classroom, or learn or do other things, who go on to be adults who develop enough skills that they no longer qualify as disabled.  I think that early intervention can play a role this skill development, but there are also some innate, perhaps unmeasurable, qualities that impact the rate at which children with autism learn various skills.

 

I also think that given the frequency with which autism overlaps with difficulties with attention, impulse control, and anxiety, there may be some children with autism who develop enough skills to no longer qualify as autistic under a medical or educational model of disability, but who continue to qualify with ADHD or an anxiety disorder.

 

To me there's a big difference between attempting to "cure" autism, and working to give a child skills so that their ability to participate in life activities is less limited.  I also think that there's a big difference between thinking of an autistic child as something to be "fixed" which can lead to the idea of fixing them at all costs, and thinking of an autistic child as someone who benefits from learning, and that learning should happen in environments that are loving, safe, emotionally healthy, developmentally appropriate, balanced etc . . . (all the things we'd want for any child).  

 

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OK - I read that article.  But my ds still got an ASD diagnosis (that he believes is accurate) and never ever had a language delay (in fact he started talking at 8 months and never slowed down), 

 

Until the most recent version of the DSM, the difference between HFA and Asperger's was language delay. If someone had language delay, the diagnosis was HFA. If someone didn't, it was Asperger's.

 

The individuals old enough to be in the study would have been diagnosed under the previous DSM-IV.

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OK - I read that article.  But my ds still got an ASD diagnosis (that he believes is accurate) and never ever had a language delay (in fact he started talking at 8 months and never slowed down), never stimmed, never had trouble with eye contact, jokes (though his jokes can be a bit on the pedantic side), was never expressionless (in fact he can be emotionally over the top) etc.  I feel like they are looking at only one picture of ASD which focuses on overt symptoms.  Ds is still hyper sensitive to sensory stimuli but he can deal with a certain amount now until he can have some recovery time at home. 

 

Yes, my child also didn't have language delay or eye contact or expressionless either. But he sure makes up for it in other areas (rigid thinking, doesn't get social cues, fixations, etc.) - so jokes are very difficult for him. But once we explain them, he finds them hilarious and will tell everyone that joke until you wish he'd never understood it... lol.

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There are orgs like TACA and um SonShine something I forget that are really into recovery. Might be easiest to see what they mean, whether YOUR definition of it matches what they're saying, etc. what they call recovery I call progress or successful outcome. That's not the same as autism goes poof.

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Well, my samplesize of 1, high IQ Aspie functions more poorly at 25 than he did at 16. Why? Bc at 16 the expectations were that of a student/dependent. At 25 they are that of an adult/independent. He absolutely cannot juggle all of the adult responsibilities on his own. He is very dependent. He also does not cope well. He cut himself quite badly at work earlier this week. While he was at the emergency room, they thought he was on drugs or something bc they thought he was over-reacting. The supervisor from work that went with him to the ER didn't say anything to anyone. When I got there, the supervisor went back to work. At one pt I was going to have to leave bc ds had forgotten his keys at work and I told them I was going to have to leave and go pick them up before they closed. They said fine, leave, I didn't need to be there. I told them that I did bc ds was autistic and sometimes he doesn't process situations well. They looked at each other and said, "autistic," like suddenly everything made sense.

 

So, for him, anyway, his functioning level has "decreased" as he has gotten older. (But not really. His ability to function has just not increased to match his age.)

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TACA may have "curing autism" in its name but I don't think most people involved with TACA believe that doctors today are truly able to cure the condition. Their "Our Story" includes the following:

 

"Today, there are many, many treatment options that help alleviate many of the symptoms suffered by our children diagnosed with autism."

 

We have seen a lot of improvement in functioning as the result of biomedical treatment plus ABA plus the various other therapies (speech, OT, social skills group, etc.) We're on the waiting list to get back in to see our integrative neurodevelopmental pediatrician as I had put biomed on hold while we were dealing with the hearing loss stuff. You can only make one change at a time and for the past couple of years those have all been hearing-related rather than ASD-related.

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Agreeing with the above posters. ASD can be mitigated and managed depending on severity, but it's a chronic condition and I don't believe it can ever be completely "cured." My oldest is 27 and passes as neurotypical. She is also medicated and is in therapy. She has issues relating to bosses and co-workers as well as sleep disturbances and weird phobias that she knows full well stems from her closet ASD. Her diagnosis no longer intrudes on her life to the extent it used to though.

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there are at least three different genetic causes.  then there is gut and some other things that can cause/trigger asd.

 

how much can be overcome depends upon cause,  as well as what you do.

 

I work with a ND who does a lot with asd kiddos, and dudeling has made tremendous progress.   we're still working, and there are days I do have to remind myself how far he has come.  but definite progress.  while he has other things besides the asd  -  some of his issues are caused by a genetic mutation that can lead to nutrient/enzyme deficiencies and conversion problems.

 

 

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there are at least three different genetic causes. then there is gut and some other things that can cause/trigger asd.

 

how much can be overcome depends upon cause, as well as what you do.

 

I work with a ND who does a lot with asd kiddos, and dudeling has made tremendous progress. we're still working, and there are days I do have to remind myself how far he has come. but definite progress. while he has other things besides the asd - some of his issues are caused by a genetic mutation that can lead to nutrient/enzyme deficiencies and conversion problems.

The recent study finding a correlation between very high folate and B12 levels in the mother's blood and high rates of autism makes me wonder about enzyme/conversion issues as a cause. Maybe whatever genes are causing the levels to be so high in the mother are contributing to autism in the child, or maybe the high levels themselves are.

 

I think as things become clearer we will find that there are multiple pathways and that each is complex.

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The recent study finding a correlation between very high folate and B12 levels in the mother's blood and high rates of autism makes me wonder about enzyme/conversion issues as a cause. Maybe whatever genes are causing the levels to be so high in the mother are contributing to autism in the child, or maybe the high levels themselves are.

 

I think as things become clearer we will find that there are multiple pathways and that each is complex.

 

there's also the finding that boy fetuses need 3x!!! the essential fatty acids of girl fetuses.  that can adversely affect the development of the corpus callosum which facilitates communication between the left and right hemispheres of the brain.

 

and mothers who are ill (depends upon what they're ill with) early in the pregnancy can affect the development of the placenta and lead to a missing protein.   I had pneumonia - with symptoms beginning about the same time I found out I was pregnant.  and implantation bleeding, and a placental abruption. . . . it was just an exciting pregnancy and I do think it had an affect upon him.

 

he's just being more difficult than usual of late.  I don't want to deal with the tween years.

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Adding, also, that I don't worry too much about causes to begin with. The causes are something I cannot change. I prefer placing my focus more on the specific strategies and tools that each of my boys will need in order to be able to function to the best of their ability. It has worked really well for both of them so far :)

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Adding, also, that I don't worry too much about causes to begin with. The causes are something I cannot change. I prefer placing my focus more on the specific strategies and tools that each of my boys will need in order to be able to function to the best of their ability. It has worked really well for both of them so far :)

Makes perfect sense!

 

Causes are something I do try to pay attention to because ASD and related issues run in my family and I'm still having kids :) If we have any information that could guide me through a pregnancy--even tentative information--I want to know about it.

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there's also the finding that boy fetuses need 3x!!! the essential fatty acids of girl fetuses. that can adversely affect the development of the corpus callosum which facilitates communication between the left and right hemispheres of the brain.

 

and mothers who are ill (depends upon what they're ill with) early in the pregnancy can affect the development of the placenta and lead to a missing protein. I had pneumonia - with symptoms beginning about the same time I found out I was pregnant. and implantation bleeding, and a placental abruption. . . . it was just an exciting pregnancy and I do think it had an affect upon him.

 

he's just being more difficult than usual of late. I don't want to deal with the tween years.

Do you have a link for the essential fatty acids research?

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Makes perfect sense!

 

Causes are something I do try to pay attention to because ASD and related issues run in my family and I'm still having kids :) If we have any information that could guide me through a pregnancy--even tentative information--I want to know about it.

I've been keeping an eye out to see when you change your sig so I can wish you on the one you are expecting ;)

 

I get what you are saying! When I was carrying my two, my main concern was my thyroid. Turns out, there's a link there too.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3115699/

My thyroid disfunction started with Hashimoto's thyroiditis, an autoimmune disorder.

 

There's so much research these days, it's next to impossible to keep up!

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I've been keeping an eye out to see when you change your sig so I can wish you on the one you are expecting ;)

 

I get what you are saying! When I was carrying my two, my main concern was my thyroid. Turns out, there's a link there too.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3115699/

My thyroid disfunction started with Hashimoto's thyroiditis, an autoimmune disorder.

 

There's so much research these days, it's next to impossible to keep up!

That is interesting; Hashimotos runs in my family as well, with my mother and three of my sisters being diagnosed.

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Do you have a link for the essential fatty acids research?

 

I should have it somewhere.  I came across it a year or two ago.  I do not have time to look for it today.

 

last week - I'd seen an epigenetic study that indicated trauma in early life altered the dna - and affected children conceived decades later.  (It was specifically looking at the children of holocast survivors) negatively affected their ability to handle stress.

 

some of it I find useful - especially the genetic and gut bacteria - becasue we *can* do something about those to perhaps mitigate manifestation of symptoms.

 

eta: oh joy with the thyroid.  I don't even know if my dr ran antibodies. . . . my ND was only looking at the numbers and I am now doing well on ndt.  but I wasn't even put on t4 until after he was born - and I'd been having hypo symptoms for years (and saw at least two different drs about them) but wasn't tested until I started having issues with my liver.  (which can be caused by hypothyroid. . . . )

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I should have it somewhere.  I came across it a year or two ago.  I do not have time to look for it today.

 

last week - I'd seen an epigenetic study that indicated trauma in early life altered the dna - and affected children conceived decades later.  (It was specifically looking at the children of holocast survivors) negatively affected their ability to handle stress.

 

some of it I find useful - especially the genetic and gut bacteria - becasue we *can* do something about those to perhaps mitigate manifestation of symptoms.

 

eta: oh joy with the thyroid.  I don't even know if my dr ran antibodies. . . . my ND was only looking at the numbers and I am now doing well on ndt.  but I wasn't even put on t4 until after he was born - and I'd been having hypo symptoms for years (and saw at least two different drs about them) but wasn't tested until I started having issues with my liver.  (which can be caused by hypothyroid. . . . )

 

Just to kind of rabbit trail this a bit, they are using TRE (Trauma Release Exercises) for that. So yes there's evidence of transmission, but there's also something to *do* about it. And I don't think anyone is saying trauma causes autism. And what I'm reading (Levine, Bercelli, etc.) isn't necessarily even saying it's genetic transmission of the trauma. I don't really understand it all, but it's more like transmission of the energy or something. I really don't know. I've got the books, read about it, but some of it was confusing. They were talking about rat studies but then saying that some of the transmission crossed even beyond genetics, sorta like relationships of the mind across continents. Got kinda weird.

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Just to kind of rabbit trail this a bit, they are using TRE (Trauma Release Exercises) for that. So yes there's evidence of transmission, but there's also something to *do* about it. And I don't think anyone is saying trauma causes autism. And what I'm reading (Levine, Bercelli, etc.) isn't necessarily even saying it's genetic transmission of the trauma. I don't really understand it all, but it's more like transmission of the energy or something. I really don't know. I've got the books, read about it, but some of it was confusing. They were talking about rat studies but then saying that some of the transmission crossed even beyond genetics, sorta like relationships of the mind across continents. Got kinda weird.

 

 

the epidgenetic studies I saw where the parent had trauma early in life, were about the their childrens  physiologic ability to handle stress. not autism.

 

the study I read about the essential fatty acids was specifically about the adverse effect upon the development of the corpus callosum in the fetus/infant.

 

I haven't looked for the link because it's been a bad day . . . and.. . we're setting up evals with a psychologist too. . . .

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Well, my samplesize of 1, high IQ Aspie functions more poorly at 25 than he did at 16. Why? Bc at 16 the expectations were that of a student/dependent. At 25 they are that of an adult/independent. 

So, for him, anyway, his functioning level has "decreased" as he has gotten older. (But not really. His ability to function has just not increased to match his age.)

 

 

This is exactly what I was thinking when they started that article with the 10yo, and even later with the studies they're citing about kids in their late teens. 

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I think a better way to look at it might be the way other neurological conditions are sometimes described. I have cerebral palsy. I will always have cerebral palsy, and someone familiar with the condition can identify me as having it very, very quickly. But I am also considered to be able to compensate very, very well, such that my functional level is higher than would be typically expected. This was a combination of (unusual for the time) early intervention, lots of therapy, and, realistically, that I rolled some really high stats to go with my low ones, which made it easier to compensate. It also helps that for the most part, I've been able to ride the crest of technology. Marrying the right person-someone who had grown up with CP in the family and knew at a visceral level that CP wasn't a barrier-while also understanding where it DOES effect me, and the big difference in day to day functioning that I face helped, too. And one of the biggest helps as an adult is being able to choose my environment. There are many things I will never do-but that's the case for adults with no disabilities, too. And there are times that I decompensate pretty hard-at which point it's pretty obvious that there really is something "wrong"with me. I have CP just as much in the ideal situation as in the one where it's obvious something is wrong. It's just that sometimes I compensate better. And even in my best situation, it takes more work and energy and effort for me to do it than for someone neurotypical, because my wiring just plain isn't the same.

 

I have seen the same thing with people on-spectrum. Some, due to a combination of finding the right interventions, good stats, and just plain luck are able to compensate so well and have the right situations such that they can pass for neurotypical in the situations they face 90+% of the time, and are able to be around trusted people for that last 10% or less. Some will never be able to do that. Either way, the wiring isn't neurotypical.

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This is still a pretty controversial topic and definitely the verdict is still out. Both my husband and I work in scientific research and have a 6 year old on the spectrum. Socially he is quirky, he leans more on the sensory processing side of things. He doesn't stim now but did a touch as a toddler. He has a dual diagnosis of gifted and ASD with a pinch of ADHD thrown in. Poor buddy is sporadic in his attention. I am in the camp though that often times focus can be part of an ASD diagnosis. It is a spectrum and with treatment (and age), those children who are verbal and hsve ASD do tend to make significant progress. They can adapt and learn to control some of the more overt symptoms but I do believe if the diagnosis was accurate then a child with ASD will be an adult with ASD. I personally don't believe it ever goes away. Although I have seen plenty of individuals with ASD who look pretty NT day to day. Often times symptoms resurface when big life changes occur. Again, just my opinion based on what I see. We compartmentalize brain disorders into nice neat packages (OCD, ASD, ADHD etc) but often times the difference is just a matter of amount of neurotransmitter and a slight shift in the cells being affected. Our sensory system is so integrated throughout which makes ASD tricky. The old saying "if you have met one person with ASD then you have met one person with ASD" holds.

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Late to the party here, but I've been chewing over this thread for the past few days.

 

I'm high functioning autistic, without language delay, so would have been Aspergers had anyone thought to diagnose me when I was a kid. It should have been blatantly obvious from about preschool on, because my stimming was not subtle. But hey, no one knew back then and I got to grow up without a label.

 

I know I pass for NT now, at least within the confines of my work environment. (Let's just say I'm not the only quirky tax attorney out there.) I have a mortgage, graduate degrees, two kids... And I'm still really autistic. Maybe more autistic. I blame the kids. Parenting overwhelms me. I love them dearly, but when one kid is climbing on me, and the other is climbing up the bookshelf, that's when I lose the ability to speak. Or read. Or think. I've learned that it's not unusual for women to be initially diagnosed in their thirties, as the demands of the house and the kids and a relationship finally surpass their ability to cope.

 

I think my autism could be measured by a seismograph. Long periods of stasis, marked by massive jolts. First semester of college. (Ugh.) Coming home after junior year study abroad. (Yikes!) Smaller tremors after big moves in my twenties. Constant rolling waves since I had kids...

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Lawyer&Mom--This might interest you. The Social Thinking people have a series of social thinking profiles that they say are typically pretty fixed by 8. You might shift within that (weak to stronger), but they're saying typically people stay within the profile. The idea is that we all continue to mature and grow, but our *peers* are growing and changing too. Here's the article. Socialthinking - Articles

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Lawyer&Mom--This might interest you. The Social Thinking people have a series of social thinking profiles that they say are typically pretty fixed by 8. You might shift within that (weak to stronger), but they're saying typically people stay within the profile. The idea is that we all continue to mature and grow, but our *peers* are growing and changing too. Here's the article. Socialthinking - Articles

Thank you. That was incredibly helpful. At first I wasn't sure I would be able to discern my own category, but I'm clearly a Weak Interactive Social Communicator. Reading that section was uncanny! It's nice to know the challenges faced by WISCs are both real and hard to pin down. Certainly sums up my experience!

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Late to the party here, but I've been chewing over this thread for the past few days.

 

I'm high functioning autistic, without language delay, so would have been Aspergers had anyone thought to diagnose me when I was a kid. It should have been blatantly obvious from about preschool on, because my stimming was not subtle. But hey, no one knew back then and I got to grow up without a label.

 

I know I pass for NT now, at least within the confines of my work environment. (Let's just say I'm not the only quirky tax attorney out there.) I have a mortgage, graduate degrees, two kids... And I'm still really autistic. Maybe more autistic. I blame the kids. Parenting overwhelms me. I love them dearly, but when one kid is climbing on me, and the other is climbing up the bookshelf, that's when I lose the ability to speak. Or read. Or think. I've learned that it's not unusual for women to be initially diagnosed in their thirties, as the demands of the house and the kids and a relationship finally surpass their ability to cope.

 

I think my autism could be measured by a seismograph. Long periods of stasis, marked by massive jolts. First semester of college. (Ugh.) Coming home after junior year study abroad. (Yikes!) Smaller tremors after big moves in my twenties. Constant rolling waves since I had kids...

 

If you could go back in time, would you have chosen to be labeled?  Do you think it would have made life easier?  My daughter is turning 17 and did have a label of SPD when she was 2 and 1/2.  But since we homeschool I have been able to control her environment so we just adjust for any issues.  I haven't pursued a label because I felt she didn't want to be "different", but now that we are approaching college (hopefully) and adult life I am starting to think maybe that wasn't the best idea.  

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Just as a thought, there's a difference between a label and an explanation. If she is beginning to have questions, then having an explanation can be good. Labels are sometimes more traumatic to the parent than the child. Sometimes the child is relieved finally to have an explanation.

 

Remember also, you do with the diagnosis what you want. Nothing says you have to share it, broadcast it, use it anywhere. Especially if you pay for the appt privately, you can do with it what you want.

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If you could go back in time, would you have chosen to be labeled?  Do you think it would have made life easier?  My daughter is turning 17 and did have a label of SPD when she was 2 and 1/2.  But since we homeschool I have been able to control her environment so we just adjust for any issues.  I haven't pursued a label because I felt she didn't want to be "different", but now that we are approaching college (hopefully) and adult life I am starting to think maybe that wasn't the best idea.  

 

I'm not Lawyer&Mom (obviously ;)), but we had DS18 formally diagnosed last year. We didn't hesitate because any of us feared labels (we don't, not at all) but because when he was younger he was diagnosed with other things (apraxia and sensory issues were the biggies) and received therapy for those but no one wanted to give the ASD label even though I was positive he qualified. We didn't push it because there was no real need for it in our opinion, especially while we home schooled. As college approached I felt it would be beneficial, both in terms of getting any needed accommodations (and hopefully preventing any problems) and in helping him understand himself better. I think getting some labels was *very* freeing for him. We're eight months out and so far none of us have any regrets.

 

 

Just as a thought, there's a difference between a label and an explanation. If she is beginning to have questions, then having an explanation can be good. Labels are sometimes more traumatic to the parent than the child. Sometimes the child is relieved finally to have an explanation.

 

Remember also, you do with the diagnosis what you want. Nothing says you have to share it, broadcast it, use it anywhere. Especially if you pay for the appt privately, you can do with it what you want.

 

And all of this, yes. I don't know that DS has revealed his diagnoses to his friends, but it has absolutely made a difference in his self esteem. He's 2e, so I'm sure having official proof of his giftedness helped his self esteem. But I think in a weirdish sort of way he's quite proud of joining the spectrum club. Or possibly it's just relief at knowing why he craves so much quiet alone time, can't dance and doesn't "get" some things. And just because you get testing and an evaluation doesn't mean you have to share. We chose to with the university DS will attend because above all things he wanted a private dorm room. The paperwork we had made it a very simple process.

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Sometimes the child is relieved finally to have an explanation.

 

This was true even for my younger child. He read the book "All Cats have Aspergers," and just turned to me and you could see his eyes light up as he told me, "Mom! These cats are just like me! I must have Aspergers!" We don't use that name regularly, and it's possible he's even forgotten it already, but it was definitely a bit of relief for him at the time. :)

 

Edited by 4kookiekids
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This was true even for my 7 yo. He read the book "All Cats have Aspergers," and just turned to me and you could see his eyes light up as he told me, "Mom! These cats are just like me! I must have Aspergers!" We don't use that name regularly, and it's possible he's even forgotten it already, but it was definitely a bit of relief for him at the time. :)

 

 

Ok, maybe it's time for me to get that book! We haven't had that talk with ds yet. I've sort of skirted it because, well because I clearly have hang-ups. I just didn't know how to make the word MEAN anything. A term isn't useful unless it answers a question, a need, matches a thought. And you're right, he's been sensing for some time he has that need to be alone. He used to say it when he was little little, which was how I knew he was different. When most little boys would be talking about who they were going to marry, he was talking about wanting to live along someday. :(

 

So yeah, I've never known how to tell him or when or why. I try to let the word get used around him. I show him autistic (and dyslexic) people and say they're brilliant. But while that's true, it's not really useful and doesn't address the angst component. Answering the angst might really help him right now. But I agree, a picture book would be way better than a little chat with the dictionary.

 

Well that was easy. The library has it!

SaveSave

Edited by OhElizabeth
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Ok, maybe it's time for me to get that book! We haven't had that talk with ds yet. I've sort of skirted it because, well because I clearly have hang-ups. I just didn't know how to make the word MEAN anything. A term isn't useful unless it answers a question, a need, matches a thought. And you're right, he's been sensing for some time he has that need to be alone. He used to say it when he was little little, which was how I knew he was different. When most little boys would be talking about who they were going to marry, he was talking about wanting to live along someday. :(

 

So yeah, I've never known how to tell him or when or why. I try to let the word get used around him. I show him autistic (and dyslexic) people and say they're brilliant. But while that's true, it's not really useful and doesn't address the angst component. Answering the angst might really help him right now. But I agree, a picture book would be way better than a little chat with the dictionary.

 

Well that was easy. The library has it!

SaveSave

 

It was really interesting for us, because I read it with two of my kids together. And the ASD one totally identified right away, as mentioned above. And then my 5 yo non-ASD kid said, "Am I like the cats?" And so I just asked her if she thought she was, and she said, "Well.... I don't really think so." And I agreed and we moved on. :) We didn't really want the older focusing on it too much, because we don't think he has the discretion to keep it private and would share it and regret it after the fact (perhaps several years after the fact). So we still haven't actually "had that talk" with our 7 yo. lol.

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If you could go back in time, would you have chosen to be labeled? Do you think it would have made life easier? My daughter is turning 17 and did have a label of SPD when she was 2 and 1/2. But since we homeschool I have been able to control her environment so we just adjust for any issues. I haven't pursued a label because I felt she didn't want to be "different", but now that we are approaching college (hopefully) and adult life I am starting to think maybe that wasn't the best idea.

I go back and forth about this. On the one hand, I think I would have loved to have had the explanation as a kid. Explanations meant and mean an awful lot to me. On the other hand, I know I would have shared that label, and probably regretted it. (I see my inability to hold back information as a noble virtue and a profound commitment to truth. It's also just a symptom of my autism.)

 

But if I was sending my 17 year-old self off to college? I'd absolutely want a label, if that meant access to additional supports. I was a star high school student, even skipped my senior year, and a really mediocre college freshman. (And I didn't know why...) I was in a dorm about a mile from campus. I should have been next to campus. I should have had a single room. I had both in law school and it made such a difference being able to retreat to my own space between classes, instead of floating adrift across campus.

 

We'll have to start a new thread soon about ASD and college. I have lots of thoughts.

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It was really interesting for us, because I read it with two of my kids together. And the ASD one totally identified right away, as mentioned above. And then my 5 yo non-ASD kid said, "Am I like the cats?" And so I just asked her if she thought she was, and she said, "Well.... I don't really think so." And I agreed and we moved on. :) We didn't really want the older focusing on it too much, because we don't think he has the discretion to keep it private and would share it and regret it after the fact (perhaps several years after the fact). So we still haven't actually "had that talk" with our 7 yo. lol.

 

Oh dear, I hadn't thought about sharing. I don't know. I feel pretty comfortable for myself on how I share things (need to know basis), but you're right it would be an issue. And sometimes kids I think forget the precise details and are left with the concept (there's an explanation, I'm normal for me, I'm accepted). 

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Oh dear, I hadn't thought about sharing. I don't know. I feel pretty comfortable for myself on how I share things (need to know basis), but you're right it would be an issue. And sometimes kids I think forget the precise details and are left with the concept (there's an explanation, I'm normal for me, I'm accepted). 

 

Ha ha. It's true. And I have a kid who I know for a fact would *either* blab it or feel like the reason he can't blab it is because it's something bad, neither of which I want for him right now. We don't know when we'll have the talk with him, but when we do, we plan to discuss it as something that is "private" - private things aren't things to be ashamed of, but they are things to not share with any old person.

 

In particular, one of ds's best friends is an older boy who had the " be inclusive" / "autism awareness" little fun-day seminar thing at school, and unfortunately walked away with the exact idea that I'm sure the organizers were hoping to avoid, and that was that kids with autism are weird. SO, all that to say that ds struggles enough socially, that I really don't want it to be an issue between him and his bestie if he blabs it to his bestie and then his bestie doesn't want to be friends with him anymore... :( I'd rather they both just have a little more time to mature.

 

Edited by 4kookiekids
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