Is this how behavioral "spectrum" works?

[mamashark]

This is a purely academic thought process without any implications on my opinions on my own children, just something I've been pondering as I walk down the road that we are on, so indulge me for a moment:

 

I am currently working to reverse prediabetes... my fasting blood sugars are not high enough to qualify as diabetic but not low enough to be "normal" so I am in the gray area of prediabetes (and in fact, the past week all my fasting numbers have been "high normal" so exciting progress!)

 

Anyway the research I'm doing on reversing this issue has me thinking about behavioral issues like ASD. Is there a "gray area" where you aren't quite neurotypical but you're not quite asd either? Seems like it should work that way - if it's a spectrum that goes from mild to moderate to severe, what is one step lower than mild? Is it neurotypical? Seems like there might be a gray area where kids aren't quite neurotypical but not quite different enough to qualify for something? 

 

No idea if I'm off base or not, but it's something I've been pondering a bit as I await evaluations.

[EKS]

You may be interested in this book: https://www.amazon.com/Shadow-Syndromes-Mental-Disorders-Sabotage/dp/0553379593

[Barb_]

Interesting book title. I believe there is a spectrum of behaviors we used to call eccentricity that are really sub clinical forms of disorders or mental illness. We have varying levels of ASD, ADHD bipolar behavior patterns in our kids, but only one solid diagnosis for each. The other four kids are neurotypical, but having been down the diagnosis path, I recognize some similar behaviors as thought processes.

[Guest]

deleted for privacy

Edited August 14, 2017 by Guest

[mamashark]

I have heard people describe that as kissing the spectrum. My 13 yr old has an ASD diagnosis by a developmental ped (verbally confirmed as Asperger's, since he was diagnosed after the new DSM came into effect), and autism with a question mark from the ped we saw last summer. The developmental ped's eval was done when he was 9 1/2. We managed to get him in for a full eval at the autism clinic (dates for evals pending) but at this stage we are unsure of the outcome.

 

I have several traits, plus SPD, plus anxiety. Would I get a dx? I don't know, but I identify with the spectrum and it has helped me help my boys in many ways.

I too recognize many of my kids traits in myself and it helps me in so many ways, both with helping my kids and with not feeling like the weird one myself, too!

 

 

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[Guest]

deleted for privacy 

 

Edited August 14, 2017 by Guest

[Mom28GreatKids]

I am sure I have un dx'd adhd inattentive. And anxiety. And sensory issues. I am pretty sure my dh had mild apraxia as a child. . .and he is a rigid thinker. . . engineer. Lol. So, of course we are gonna have kiddos with non neurotypical wiring. Littlest got all of the above. All of it. No asd dx as of yet, but could in the future. If we use the spectrum idea, he is likely kissing it, yes. Almost, but Nooooot Quite. . . . yet. Lol. :-)

[Daria]

The way I understand it is that there are some conditions or disabilities you either have you or you don't.  Trisomy 21, or a broken leg, or retinal detachment, for example.  Then there are other conditions like high blood pressure, or obesity, or dyslexia, or ASD, where researchers have set a criteria in a sort of arbitrary place.  That is to say, 

 

So, for example, if we use the 2 SD cut off that some school districts use for dyslexia, then a child who is 1.98 SD's from the mean will be considered a typical kid who isn't great at reading, and a kid who is 2.02 SD's from the mean will be considered disabled, but what they can do day to day, and what they need day to day won't be very different at all.  Furthermore, if you took that kid who is 1.98 SD from the mean to another tester, and didn't give him breakfast that day, or whatever, he might suddenly find himself with a dyslexia diagnosis.

 

Similarly, I'm 5'6" tall.  If I weighed 186 lbs, I'd be considered obese.  If I then got my hair cut, or relieved myself, or didn't eat for a while, I might find that suddenly I'm 185.  Yay!  I'm merely overweight.  But realistically, my dietary needs, and my risk for arthritis in my knees, and my choice of clothing stores wouldn't have changed, because the experience of someone who weights 185 lbs (overweight) is a lot more like the experience of someone who weighs 186 lbs (obese) than it is like someone who weighs 155 (overweight).  

 

Similarly, the line between "ASD" and "quirky" from a medical or education perspective is somewhat arbitrary.  There are many people who sit right on that line, and who might fall on different sides on different days depending on the skill of the tester, or whether something has triggered anxiety, or how well they slept.  There are also many people who are far enough from the line, on either side, that there is no doubt about whether or not they are ASD.

[mamashark]

The way I understand it is that there are some conditions or disabilities you either have you or you don't. Trisomy 21, or a broken leg, or retinal detachment, for example. Then there are other conditions like high blood pressure, or obesity, or dyslexia, or ASD, where researchers have set a criteria in a sort of arbitrary place. That is to say,

 

So, for example, if we use the 2 SD cut off that some school districts use for dyslexia, then a child who is 1.98 SD's from the mean will be considered a typical kid who isn't great at reading, and a kid who is 2.02 SD's from the mean will be considered disabled, but what they can do day to day, and what they need day to day won't be very different at all. Furthermore, if you took that kid who is 1.98 SD from the mean to another tester, and didn't give him breakfast that day, or whatever, he might suddenly find himself with a dyslexia diagnosis.

 

Similarly, I'm 5'6" tall. If I weighed 186 lbs, I'd be considered obese. If I then got my hair cut, or relieved myself, or didn't eat for a while, I might find that suddenly I'm 185. Yay! I'm merely overweight. But realistically, my dietary needs, and my risk for arthritis in my knees, and my choice of clothing stores wouldn't have changed, because the experience of someone who weights 185 lbs (overweight) is a lot more like the experience of someone who weighs 186 lbs (obese) than it is like someone who weighs 155 (overweight).

 

Similarly, the line between "ASD" and "quirky" from a medical or education perspective is somewhat arbitrary. There are many people who sit right on that line, and who might fall on different sides on different days depending on the skill of the tester, or whether something has triggered anxiety, or how well they slept. There are also many people who are far enough from the line, on either side, that there is no doubt about whether or not they are ASD.

Thank you, you put my thoughts into words beautifully!

 

 

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[Guest]

Agreeing with Daria but adding, just because someone doesn't make the cut off, it doesn't mean they don't have challenges. It often just means that they have found ways of compensating; something very common especially in those that are 2E.

Edited May 1, 2017 by Guest

[mamashark]

Agreeing with Daria but adding, just because someone doesn't make the cut off, it doesn't mean they don't have challenges. It often just means that they have found ways of compensating, something very common especially in those that are 2E.

Exactly why I've been working to reverse the prediabetes. Just because you may find yourself or your child in a gray area doesn't mean help isn't needed.

 

 

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[Storygirl]

There is definitely a gray area. DS does not have an ASD diagnosis (at this point), but he does have a VERY long list of other diagnoses and traits that present difficulties. It's actually a kind of frustrating position to be in, because we face many of the same challenges as someone with HFA would, but do not qualify for the same services.

 

Just this week, the psych we are working with said, "The thing about a spectrum is that it does not go on forever. There is an end to it, and some people have to be just past that end mark."

 

Those individuals that are that close to the spectrum are not going to be neurotypical.

Edited May 1, 2017 by Storygirl

[Guest]

deleted for privacy 

 

Edited August 14, 2017 by Guest

[Daria]

Agreeing with Daria but adding, just because someone doesn't make the cut off, it doesn't mean they don't have challenges. It often just means that they have found ways of compensating; something very common especially in those that are 2E.

 

Yes, absolutely agree.

 

To me, one of the hardest places to be right off a cut off is with intellectual disability.  In the district where I used to teach, the cut off for intellectual disability was (as usual) that a student needed to be below a standard score of 70 (2nd percentile) for both IQ and adaptive functioning.  But in order to qualify for learning disability, they needed to have a discrepancy of 2 SD between their intellectual and academic functioning.

 

A kid with an IQ of 72, let's say and a discrepancy of 1.5 SD will have academic skills around a standard score of 50.  That puts their skills at the 0.1 %ile, worse than 999/1000 other students their age.  Now, there's no way a kid with academic scores at that level is going to be successful without special education support and accommodations, but often the district would refuse to qualify them because, technically, they didn't meet the state definition of either ID or LD. 

[Guest]

This makes me really sad :( Thankfully, there are parents that are able to homeschool. How discouraging for those kids that have to attend school under these conditions :(

[Tap]

Sure there is a wide variation.  There are also kids who have distinct ASD traits, who are able to control them on good days, but when they are having a rough or stimulating day, the traits come to the forefront and are very obvious.  Flapping and vocalizations are very obvious traits that can vary on the situation the ASP person is observed in.

 

There are kids who have been taught by others (most likely a parent/teacher/therapist) how to overcome some ASD traits.  One big one, is making eye contact.  Not all, but many ASD kiddos have learned to make eye contact.  It may or may not become comfortable, but they may be able to have normal eye contact with those around them.

 

Teaching them to read emotions, is another common thing that can be taught.  A NT person, will learn this intrinsically.  A ASD person, may need to be specifically taught what emotions are, what they look like, and about body language.  They may not read people naturally, but they can be shown/taught to look at eyebrows, the smile, etc to figure out the difference between emotions like rage/laughter.

 

 

To the outside world, these kiddos may not appear to have 2 major identifiers of ASD.  It isn't that the ASD can be cured so to speak.....but the person may have been taught these skills,  what others learn naturally.

[mamashark]

This makes me really sad :( Thankfully, there are parents that are able to homeschool. How discouraging for those kids that have to attend school under these conditions :(

Yes, it's very frustrating. I worked as a special educator in my past life and I still remember trying to explain to parents why I wasn't Allowed to work with their kids, why they didn't qualify.

 

I also remember being frustrated with the situation when a private school kid came to us for testing and we could tell them before we tested that she wouldn't qualify because of the rigor of the private school. We were right, the patents left frustrated and a bright kid with a potential learning disability was not given help because of our inability to work with anything but one one type of special need child.

 

 

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[mamashark]

Sure there is a wide variation. There are also kids who have distinct ASD traits, who are able to control them on good days, but when they are having a rough or stimulating day, the traits come to the forefront and are very obvious. Flapping and vocalizations are very obvious traits that can vary on the situation the ASP person is observed in.

 

There are kids who have been taught by others (most likely a parent/teacher/therapist) how to overcome some ASD traits. One big one, is making eye contact. Not all, but many ASD kiddos have learned to make eye contact. It may or may not become comfortable, but they may be able to have normal eye contact with those around them.

 

Teaching them to read emotions, is another common thing that can be taught. A NT person, will learn this intrinsically. A ASD person, may need to be specifically taught what emotions are, what they look like, and about body language. They may not read people naturally, but they can be shown/taught to look at eyebrows, the smile, etc to figure out the difference between emotions like rage/laughter.

 

 

To the outside world, these kiddos may not appear to have 2 major identifiers of ASD. It isn't that the ASD can be cured so to speak.....but the person may have been taught these skills, what others learn naturally.

This is probably why my son doesn't look asd. PROMPT therapy as a child did amazing things for him and I'm sure it taught him to overcome things that would make his behaviors look more obviously atypical if he hadn't learned them . We will see if that knocks him out of a diagnosis.

 

 

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[TracyP]

My ds has an evaluation coming up at the end of May, and I worry this is exactly where he is going to land. "Kissing the spectrum" is exactly what my gut says we are looking at. I'm trying to not worry about it preemptively, but it is my worst case scenario going into evaluations. I also wonder if he could *almost* qualify for a dyslexia or dyscalculia diagnosis. I don't know if that is how it works....

 

My ds already falls into this gray area when it comes to his speech therapy. His therapist has commented on how beneficial it is that we can homeschool. She said that kids like him in ps get therapy which brings their scores just high enough for the therapy to stop. Then a year or two passes and without targeted help, they fall behind again. So they qualify for therapy for the next year or two. Rinse and repeat. The kid is left just barely hanging on when they could be making gains that whole time. It is very sad.

[Kanin]

Agreeing with Daria and Mamashark. I work at a private school for kids with learning disabilities, but even here there are certain cutoffs that kids have to meet. If their learning issues are too severe, they won't be accepted. It's very frustrating for me. Many parents have kids who fall into the "gray zone" where they need more rigor than a life skills class at a public school, but can't keep up with a private school, even one that caters to special needs. There aren't enough schools that cater to that in-between kid. Parents get stuck with no good options.

[Tap]

This is probably why my son doesn't look asd. PROMPT therapy as a child did amazing things for him and I'm sure it taught him to overcome things that would make his behaviors look more obviously atypical if he hadn't learned them . We will see if that knocks him out of a diagnosis.

 

 

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With my daughter, I kept all the old assessment notes from her therapists, intake reports and evaluations.  The lack of eye contact and other things are noted in those reports.  Most of the time, when I talk to new doctors about her ASD diagnosis they can't see it currently, but they will continue her diagnosis forward with a note that it was diagnosed by another clinician.

[Storygirl]

This is probably why my son doesn't look asd. PROMPT therapy as a child did amazing things for him and I'm sure it taught him to overcome things that would make his behaviors look more obviously atypical if he hadn't learned them . We will see if that knocks him out of a diagnosis.

 

 

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I can't tell if you are hoping he gets the diagnosis or are hoping he does not. Whichever way you feel, I hope that you are content with the results. Be prepared to be surprised; many times the evaluations reveal things we did not expect, or the child is too close to the line to diagnose, even though the difficulties cause problems.

 

Anyway, I guess I want to say not to hope to NOT get a diagnosis. If you see ASD traits, it will be easier to get help. Having the traits but not the diagnosis is a frustrating gray area to operate in, and it gets murkier as they get older.

 

I've been having a lot of conversations about this very issue this week, with our psych, schools we are touring, with my DH, and with friends. Not having a diagnosis has been tricky for us.

 

ETA: Just to clarify, DS has a huge list of diagnoses and difficulties, but not ASD.

Edited May 1, 2017 by Storygirl

[Guest]

Yes, it's very frustrating. I worked as a special educator in my past life and I still remember trying to explain to parents why I wasn't Allowed to work with their kids, why they didn't qualify.

 

I also remember being frustrated with the situation when a private school kid came to us for testing and we could tell them before we tested that she wouldn't qualify because of the rigor of the private school. We were right, the patents left frustrated and a bright kid with a potential learning disability was not given help because of our inability to work with anything but one one type of special need child.

 

 

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Yes, cases like this are really sad. I hope the parents were able to find some solution for their child. No one can stop a determined parent! Temple Grandin's parents were told their only option was to institutionalize. Her mother was not prepared to accept that for her child. She did what she had to do and look where her child is today! Edited May 1, 2017 by Guest

[mamashark]

I can't tell if you are hoping he gets the diagnosis or are hoping he does not. Whichever way you feel, I hope that you are content with the results. Be prepared to be surprised; many times the evaluations reveal things we did not expect, or the child is too close to the line to diagnose, even though the difficulties cause problems.

 

Anyway, I guess I want to say not to hope to NOT get a diagnosis. If you see ASD traits, it will be easier to get help. Having the traits but not the diagnosis is a frustrating gray area to operate in, and it gets murkier as they get older.

 

I've been having a lot of conversations about this very issue this week, with our psych, schools we are touring, with my DH, and with friends. Not having a diagnosis has been tricky for us.

 

ETA: Just to clarify, DS has a huge list of diagnoses and difficulties, but not ASD.

I have no expectations, I'm focusing on doing what I can in the meantime. I honestly don't know whether that's the right diagnosis or not. More of what I see is sensory stuff but following through with the evals is important. My MIL is having a heart attack over the whole issue because she's terrified that he'll get any label at all.

 

 

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[Storygirl]

Sorry about your MIL. Try your best not to talk about it with her. You are under no obligation to share with her (or anyone else) the results of the testing. She may not like it if you don't tell her everything you learn, but you can hold firm that it is private medical information that is meant to be confidential.

 

:grouphug:

[Guest]

deleted for privacy 

 

Edited August 14, 2017 by Guest

[Guest]

This is probably why my son doesn't look asd. PROMPT therapy as a child did amazing things for him and I'm sure it taught him to overcome things that would make his behaviors look more obviously atypical if he hadn't learned them . We will see if that knocks him out of a diagnosis.

 

 

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I have watched videos of various kids getting PROMPT therapy on YouTube. A friend's child had PROMPT so I was interested in seeing what it looked like. I completely agree with you! Edited May 1, 2017 by Guest

[Guest]

My ds has an evaluation coming up at the end of May, and I worry this is exactly where he is going to land. "Kissing the spectrum" is exactly what my gut says we are looking at. I'm trying to not worry about it preemptively, but it is my worst case scenario going into evaluations. I also wonder if he could *almost* qualify for a dyslexia or dyscalculia diagnosis. I don't know if that is how it works....

 

My ds already falls into this gray area when it comes to his speech therapy. His therapist has commented on how beneficial it is that we can homeschool. She said that kids like him in ps get therapy which brings their scores just high enough for the therapy to stop. Then a year or two passes and without targeted help, they fall behind again. So they qualify for therapy for the next year or two. Rinse and repeat. The kid is left just barely hanging on when they could be making gains that whole time. It is very sad.

:grouphug: Hope things work out for the best!

 

Edited for privacy.

Edited August 14, 2017 by Guest

[Guest]

I can't tell if you are hoping he gets the diagnosis or are hoping he does not. Whichever way you feel, I hope that you are content with the results. Be prepared to be surprised; many times the evaluations reveal things we did not expect, or the child is too close to the line to diagnose, even though the difficulties cause problems.

 

Anyway, I guess I want to say not to hope to NOT get a diagnosis. If you see ASD traits, it will be easier to get help. Having the traits but not the diagnosis is a frustrating gray area to operate in, and it gets murkier as they get older.

 

I've been having a lot of conversations about this very issue this week, with our psych, schools we are touring, with my DH, and with friends. Not having a diagnosis has been tricky for us.

 

ETA: Just to clarify, DS has a huge list of diagnoses and difficulties, but not ASD.

This mentality is what needs to change. ASD kids are not the only kids that require services!

[Guest]

deleted for privacy 

 

Edited August 14, 2017 by Guest

[Mom28GreatKids]

There is definitely a gray area. DS does not have an ASD diagnosis (at this point), but he does have a VERY long list of other diagnoses and traits that present difficulties. It's actually a kind of frustrating position to be in, because we face many of the same challenges as someone with HFA would, but do not qualify for the same services.

 

Just this week, the psych we are working with said, "The thing about a spectrum is that it does not go on forever. There is an end to it, and some people have to be just past that end mark."

 

Those individuals that are that close to the spectrum are not going to be neurotypical.

This. . . us too. Exactly.

[Guest]

nm

Edited August 14, 2017 by Guest