Standard Screen misses *Majority* of Autistic Toddlers

[Lawyer&Mom]

https://www.spectrumnews.org/news/standard-screen-misses-majority-of-toddlers-with-autism/

We’ve had a couple discussions lately about late diagnosis and feeling guilty about missing Autism symptoms.  This study ought to make us all feel better.  (I feel so freaking vindicated.)

[Storygirl]

Wow. That's a very high percentage of false positives and false negatives!!

[PeterPan]

I'm wondering if that was what was done on my ds. The SLP and the ped used the same form, iirc. And after that form, yeah the blow-off and a lot of assumptions. So if that form was the MCHAT (he was the right age at the time), that would explain what happened.

[Lawyer&Mom]

I don’t actually care that much about the MCHAT, at least as far as it affected me personally.   It was free and I knew it was basically irrelevant for my kid when we took it.  What really frustrates me is the ADOS.  Spent a ton of money on that and I’m pretty confident it was a false negative the first time around.  But knowing the MCHAT is so unreliable just confirms that we are still in the dark ages of Autism assessments, and that’s what makes me feel better.

[Lawyer&Mom]

Here is the paper itself.

https://pediatrics.aappublications.org/content/141/6/e20173596

An interesting twist:  Girls who turned out to be Autistic, even though they originally passed the MCHAT were rated less shy than girls who were truly not Autistic.  Diminished social inhibition.  This feels very true in my experience.

[kbutton]

12 hours ago, Lawyer&Mom said:

I don’t actually care that much about the MCHAT, at least as far as it affected me personally.   It was free and I knew it was basically irrelevant for my kid when we took it.  What really frustrates me is the ADOS.  Spent a ton of money on that and I’m pretty confident it was a false negative the first time around.  But knowing the MCHAT is so unreliable just confirms that we are still in the dark ages of Autism assessments, and that’s what makes me feel better.

We have not done the ADOS, but I am hopeful that it's getting better since I know people who have had their kids identified with the ADOS who were initially missed with full assessments (not just by the MCHAT). It seems like training makes a difference.

[Lecka]

Lawyer Mom -- What you are saying is known about the ADOS.  You can google the same site (spectrumnews.org) and find articles about it.  

https://www.spectrumnews.org/news/diagnostic-tests-for-women-with-autism-fall-short/

https://www.spectrumnews.org/news/diagnostic-tests-miss-autism-features-girls/

 

Edited September 28, 2019 by Lecka

[Lawyer&Mom]

10 hours ago, kbutton said:

We have not done the ADOS, but I am hopeful that it's getting better since I know people who have had their kids identified with the ADOS who were initially missed with full assessments (not just by the MCHAT). It seems like training makes a difference.

 

In our case, an experienced practitioner who focuses just on Autism made all the difference.  I feel so fortunate that I finally found someone who really gets me and my kid.  It wasn’t the first practitioner we tried, who was more of a generalist.  The second one, whether she ends up diagnosing my daughter or not, at least she understood why we were there and what we were dealing with. 

[gardenmom5]

back when I was on my local asd group - there was one entire (large) chain of pediatric clinics people were advised to avoid because they would only acknowledge the most severe cases.  my pediatrician of 20+ years (I have a huge gap between my oldest and youngest) had joined this chain - I ended up dropping him because of how he treated us when I went in and wanted my son specifically screened - and a referral to the children's hospital program for testing.  (I ended up with a full work up at the medical school's child development clinic.)

there are definitely attitudes within the medical community that dont' want to acknowledge it.

[popmom]

"take caregivers' concerns seriously"

I knew something wasn't right with my youngest, but I could never bring myself to talk to the pediatrician about it. She was my 4th child, and I'd been blown off for every other concern I ever had with my other 3--"she's just a high need baby, etc".  

Also, when I did finally get an evaluation. I called and talked to the psychologist. I asked about the difficulty in diagnosing girls--trying to get a feel for how this would play out. She gave me all the right answers, told me what I wanted to here. Then we get there and we got the same ADOS that everyone gets. The same checklists. One size fits all. The "girl factor" never once came up. She still got the diagnosis, but I felt...I don't know what to call it... like trust had been broken.

[PeterPan]

11 hours ago, stephensgirls said:

I don't know what to call it... like trust had been broken.

Maybe trust, maybe also the facade is broken with the whole omniscience of the psych, the precision of the diagnoses, etc. We pay these people $$$$$$$$ (like maybe 10 X what our spouses make working a hard job) and they come up with incorrect answers and no refunds.

Edited October 3, 2019 by PeterPan

[Lawyer&Mom]

So an update of sorts:  my second neuropsych said the first neuropsych actually did a really good report, but that my daughter’s social difficulties were too nuanced to show up on the toddler version of the ADOS.  They did show up on the elementary kid version.  So yay!  I wasn’t crazy. And yay!  The ADOS can work, sometimes!  But it would have been really nice if someone had told me the toddler test had limitations, and encouraged me to retest my kid when she was older.  Which I did do, but only because I insisted, and after overcoming a lot of spousal resistance.  The whole process still needs major improvement. 

[4KookieKids]

1 hour ago, Lawyer&Mom said:

So an update of sorts:  my second neuropsych said the first neuropsych actually did a really good report, but that my daughter’s social difficulties were too nuanced to show up on the toddler version of the ADOS.  They did show up on the elementary kid version.  So yay!  I wasn’t crazy. And yay!  The ADOS can work, sometimes!  But it would have been really nice if someone had told me the toddler test had limitations, and encouraged me to retest my kid when she was older.  Which I did do, but only because I insisted, and after overcoming a lot of spousal resistance.  The whole process still needs major improvement. 

I agree it needs improvement. My dd8 got the dx even though she fell a point short of the threshold on the ADOS. I appreciated our examiner really listening to us when she made the final decision. In particular, she fell short of the threshold, despite being able to articulate things like:
It's hard to understand people. In public, in a group, I'll say stuff like, "Yeah, yeah, totally!" But I'll walk away from the group thinking, "What just happened? I don't understand what's going." When I get in trouble for being mean, I don't understand how or why I got in trouble and I'm sad that people don't understand. I'm having a good day and all of a sudden I'm in trouble, but I feel so left out because I don't understand what I did or why they're so upset. It's hard because my brain just doesn't understand things. I feel left out because my brain doesn't understand things that other people understand. And even the things I do understand, I can't do in public because my brain gets so confused around people. 
She's smart enough to have learned how to avoid a lot of social mishaps by withdrawing and it passes for "shy," and some other things she's learned just because we've taught social rules explicitly since she was 2 because my older child and husband are also autistic. And the older she gets, the more obvious the signs are - but it took me a lot to actually see them. (E.g., I answered "No" to the question about if she likes to line things up, like toys, cars, etc., and never once thought about how often she re-folds and organizes the clothes in her dresser -- several times a week -- nor did I consider how often she rearranges her books on her bookshelf so that they are in some kind of order.) Even the *examples* they give (cars, trucks, trains) lead you towards a particular profile, it seems, and caused me to not see what was so obviously in front of me. 

[Lawyer&Mom]

I also was diagnosed even though I “passed” the ADOS.  It’s almost good it took me two years to find someone to assess an Adult. Gave me lots of time to think of examples for each of the diagnostic criteria!  (I walked in with a five page outline of symptoms.  Yes, I am Autistic....)

[Jentrovert]

I'm following along with interest. We have an eval coming up next month for my dd7, almost 8, and although I did the best I could to find a psych with experience with girls I'm still worried about it.

My husband is undx'd himself, but we have no doubt about him, and although it does present quite differently in some ways, we can clearly see it with her. I look back now, and behaviors I had previously attributed to other things are just so clear. (If she were biologically related to us, autism would have been on our radar much earlier. Kind of ironic that we didn't consider it, when her behaviors are so similar to my husband! ETA: But the similarities are in the bigger picture, the rigid thinking that produces behaviors that, on the surface, don't seem that similar in themselves.) The last year has been fairly difficult in dealing with her, like it's been ramping up. My husband said he was the same and it peaked around puberty. (From his perspective)

Anyway, pragmatic language issues are already documented (SLP). I've been keeping notes that I will organize prior to the eval, and I've had it in mind to answer questions on the paperwork with a "worst day ever" in mind. I am also trying to prepare myself for the possibility that she won't be diagnosed at this time.

 

Edited October 16, 2019 by Jentrovert

[kbutton]

15 hours ago, Jentrovert said:

Anyway, pragmatic language issues are already documented (SLP).

This is a helpful step in the right direction. Truly.

[Lawyer&Mom]

17 hours ago, Jentrovert said:

I'm following along with interest. We have an eval coming up next month for my dd7, almost 8, and although I did the best I could to find a psych with experience with girls I'm still worried about it.

My husband is undx'd himself, but we have no doubt about him, and although it does present quite differently in some ways, we can clearly see it with her. I look back now, and behaviors I had previously attributed to other things are just so clear. (If she were biologically related to us, autism would have been on our radar much earlier. Kind of ironic that we didn't consider it, when her behaviors are so similar to my husband! ETA: But the similarities are in the bigger picture, the rigid thinking that produces behaviors that, on the surface, don't seem that similar in themselves.) The last year has been fairly difficult in dealing with her, like it's been ramping up. My husband said he was the same and it peaked around puberty. (From his perspective)

Anyway, pragmatic language issues are already documented (SLP). I've been keeping notes that I will organize prior to the eval, and I've had it in mind to answer questions on the paperwork with a "worst day ever" in mind. I am also trying to prepare myself for the possibility that she won't be diagnosed at this time.

 

 

I found it really helpful to make a list of the diagnostic criteria and brainstorm with other adults (Dad, Grandma, teachers...) about possible symptoms/behaviors that could fit.  It helps you think outside the box a bit, which I needed with a girl.  (Oh yeah, drawing pictures of Princesses every single day *is* a repetitive interest...)  This way I came to the meeting armed with anecdotes and ready to engage.  

[Jentrovert]

1 hour ago, Lawyer&Mom said:

 It helps you think outside the box a bit, which I needed with a girl.  (Oh yeah, drawing pictures of Princesses every single day *is* a repetitive interest...)  

When I first reviewed the diagnostic criteria, I thought, well, she doesn't have any repetitive interests. While I was thinking on this later, I was interrupted by yet another monologue on the cuteness of babies and her cheerful observation, "I don't know why I just CANNOT stop thinking about babies ALL the time! Babies are the best! Babies are . . . " 🤦‍♀️ Lightbulb. She definitely has repetitive interests, they just happen to be normal interests for little girls, taken to an extreme. 

[popmom]

On 10/3/2019 at 8:20 AM, PeterPan said:

Maybe trust, maybe also the facade is broken with the whole omniscience of the psych, the precision of the diagnoses, etc. We pay these people $$$$$$$$ (like maybe 10 X what our spouses make working a hard job) and they come up with incorrect answers and no refunds.

 

I have an update to add, too. When my dd was having all the evaluations done, she was also tested for ADHD.( I’ll have to locate the report because I can’t remember which tool was used for this.) She was negative for ADHD, and I remember the psych saying she does not have attention issues. Well, to make a very long story short, dd just took her first dose of Vyvanse this morning. An hour later she was curled up on the sofa—I’m thinking she’s sick. Nope, she was fine but super drowsy. Just checked on her and she’s asleep. She never sleeps during the day. I’d say that confirms the diagnosis lol. The original screening missed it. This is why seeing a dr for the first time for evals of any kind is so stressful. At least for me. 

Edited October 18, 2019 by stephensgirls

[Storygirl]

20 hours ago, stephensgirls said:

 

I have an update to add, too. When my dd was having all the evaluations done, she was also tested for ADHD.( I’ll have to locate the report because I can’t remember which tool was used for this.) She was negative for ADHD, and I remember the psych saying she does not have attention issues. Well, to make a very long story short, dd just took her first dose of Vyvanse this morning. An hour later she was curled up on the sofa—I’m thinking she’s sick. Nope, she was fine but super drowsy. Just checked on her and she’s asleep. She never sleeps during the day. I’d say that confirms the diagnosis lol. The original screening missed it. This is why seeing a dr for the first time for evals of any kind is so stressful. At least for me. 

Your post brought two things to mind:

1) You probably know this, but it can take awhile to figure out which medication works best at which dosage. We haven't used Vyvance, but we have tried many ADHD meds, and we've had to make adjustments. If the sleepiness continues to be an issue, you can contact the doctor, who can adjust the dosage or switch her to a different med. I'm glad she is finally getting some help!!

2) We have not succeeded in getting a diagnosis for DD14, even though it is obvious that she has it. When she was 10, the neuropsych said that he believed she had ADHD and had some data to back that up, but not enough to diagnose. We had been homeschooling, so we didn't have teachers to fill out forms for us, for one thing. Since then, we have asked teachers to fill out forms (three different times), and the teachers never note enough to qualify her for a diagnosis. Even though our parent forms flag problems, and even though DD14 self-reports focus issues and believes that she has ADHD. It's frustrating.

I don't know how adults get diagnoses without teachers to fill out forms. Teacher forms can be a problem, in our experience, because they have so many students to observe that, unless the hyper or inattention is severe, they may not see it. And some students can hold things together and mask the problems at school but then fall apart at home.

The teacher form requirement ends up prioritizing issues in the classroom over issues in other parts of life, and over what the individual notices within themselves. It's been an issue for us. I wish we could try a small dosage of a med for DD14, but we haven't been able to.

[kbutton]

2 hours ago, Storygirl said:

I don't know how adults get diagnoses without teachers to fill out forms. Teacher forms can be a problem, in our experience, because they have so many students to observe that, unless the hyper or inattention is severe, they may not see it. And some students can hold things together and mask the problems at school but then fall apart at home.

For adults, finding a doctor that will do ADHD meds is kind of the first step. But then, it's often self-reported, or they can mention that their counselor told them to get the ball rolling. Then the counselor can write a letter. Sometimes the doctor likes to have spousal feedback. Anytime you mention struggling to do work tasks, they also listen because that's a big deal for adulting. 

A good counselor should know about masking and falling apart--if you can get a counselor to write a letter and get parent feedback, you might be able to bypass the teacher forms. 

[PeterPan]

On 10/19/2019 at 9:25 AM, Storygirl said:

s been an issue for us. I wish we could try a sm

Maybe a new doc? Our ped (whom we’ve moved on from) did the Quotient. It’s one of my favs on the tap tap tests, turns out lots of data, and it let the MD feel confident having their own opinion.

[Storygirl]

4 hours ago, PeterPan said:

Maybe a new doc? Our ped (whom we’ve moved on from) did the Quotient. It’s one of my favs on the tap tap tests, turns out lots of data, and it let the MD feel confident having their own opinion.

The NP ran the TOVA on DD14, and it flagged her as having ADHD, so she would likely have her issues show up on Quotient as well. But we would have to have a doctor who would diagnose without teacher input, because teachers don't see it.

 

[PeterPan]

57 minutes ago, Storygirl said:

The NP ran the TOVA on DD14, and it flagged her as having ADHD, so she would likely have her issues show up on Quotient as well. But we would have to have a doctor who would diagnose without teacher input, because teachers don't see it.

 

Our ped didn’t ask for teacher forms. Of course we homeschool haha. But still try another doc.