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nwahomeschoolmom

Finally had our eval! - UPDATE

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My son finally had his autism eval today...we get the results in three weeks.   We didn't get much feedback today except she confirmed that he was "not-typical."  She started out the eval saying the ADHD diagnosis was well established, so I don't think she would be referring to that.  If not ASD, what else would it be?  Waiting for the results is going to be a lot harder than waiting for the eval to take place, at least for me!  She asked if I thought my son's emotional responses seemed "rehearsed"?  Would that be a question related to ASD?  

UPDATE:  Well, we got the results today and they were sort of the same as the last eval, which I guess is good.  The psychologist once again said severe ADHD, but added that it was the severe end of severe ADHD.   The psych did not have issue with him being homeschooled and thought that it was the best for him at his young age.   He did test as having a gifted IQ this time, even without calculating the GAI score (134).  She said the score was underestimated due to him not being on medication. She just said that the reason he seems to be on the spectrum is the combination of his giftedness and the severe ADHD, but that he did not actually have autism.  She talked about how the stimming is a coping mechanism for him in dealing with the ADHD etc.  Good thing we were thinking it already, but she really encouraged medication.  The first psych really encouraged public school, but this psych was actually complimentary of our parenting and homeschooling and really thought that his ADHD was so severe that she thought stimulant medication was the way to go, even though she generally doesn't recommend it.  She said that medication could possibly bring him to moderate ADHD level, and maybe mild (but probably not.)  I do hope she is right about this because we can't afford another evaluation!   She said she thought the "rehearsed" behavior of my son was related more to him :pretending to be a kid" due to the giftedness.  Not sure what I think about that.  He really does have so many autistic traits.  He did fine on the ADOS, but one of the parent forms we filled out came back with moderate autism.    She also said due to having such severe ADHD and being unmedicated that he was was "socially delayed" and believes that medication would help him catch up, plus pragmatic expressive speech therapy if he qualifies.  So part of me is hopeful that she is right about everything, but part of me is fearful in case she is not right.  I guess we will know soon enough.  We will probably try medication in a few weeks after a family trip. 

I'm just a person that likes things really clear cut, and black-and-white.  Its hard for me that he has such severe ADHD, but also so many autistic traits.  She was explaining to me that how I was feeling was similar to a parent with a child that has severe autism not relating to everything a parent of a child with mild autism is going through, and vice versa.  I guess its just part of the journey.  It would just be great if his diagnosis was really clear cut and I could plug right in to "such and such" support group for parents of kids just like mine.  Instead his diagnosis is sort of a gray area. 

 Well, thanks for reading this long post!

Edited by nwahomeschoolmom
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I don’t know what else it could be.  

I hope you get some really good information 🙂

Wow, 3 weeks is a long time to wait!

 

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I think rehearsed emotions could be related to ASD. For example, someone who smiles, but it does not come across as genuine or natural. Or someone who knows how to identify emotions but does not exhibit them typically.

DS14 has something called nonverbal learning disorder, and he does not use nonverbal social cues effectively. In his case, he can identify social cues correctly, but he does not use them. For example, he knows what smiling means, but he does not smile to connect with others but only smiles when he is amused. If he decided to smile for communication while talking with someone, it might come across as practicing rather than as genuine.

I hope you get helpful answers. I know waiting for the report is hard.

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On February 6, 2019 at 7:54 PM, nwahomeschoolmom said:

She asked if I thought my son's emotional responses seemed "rehearsed"?

Yes, ds had lists of memorized words but they weren't really connected to reality or something he USED.

Sorry the wait is awful. I think you know in your heart what the answer is so the real curiosity is what support level she'll say and what services. I'm surprised she's having you wait so long. Was it just one day? 

Be very good to yourself on the day of that appointment. No matter what happens, it's going to be emotional.

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It's not like yes ADHD, no ASD. When you talk with psychs, they'll explain it that the most severe ADHD merges right into autism. What she's rolling with now is that his ADOS is good, which is good. Like that's GOOD! Of all the things there, that's really good! 

So it's back to basics. You get the ADHD meds, treat the ADHD, and you intervene on everything she had listed. She said there are pragmatics, social delay, self-regulation issues, I forget what else. Something language like narrative? She probably didn't test that. The interventions are the same, no matter whether it's called ADHD with social delay or ASD or nothing at all. 

My ds had the same thing happen at 6 (minus the ADOS) and at 10 he's labeled ASD2. Some things are not immediately obvious and my personal opinion is blowing off things as happening because he's gifted is, well it's just a bunch of hot air. That's what the psych did with us. Ds would flap, oh that's because he's gifted. Ds would recite pages from books, oh that's because he's gifted. It was dumb. Actually by about 8 it was at the point where there was just no way to say it wasn't there. The discrepancies and differences were just more obvious.

It is what it is. That does seem screwy to me that she didn't dig further when your parent forms were flagging. What forms did that show up on? There are so many tools they use and some are more significant than others. It's a thing where at some point you can do a 2nd opinion and they can use a different, more detailed tool or one that discriminates. They have tools that will discriminate ASD from some other mental health disorders, etc. 

Most common age for an aspergers diagnosis is 9/10, right? I've met so many people who were told no over and over and as the child got older the psychs changed their tune. It's crazy. But for your purpose, except for funding, it doesn't really matter. She gave you all the terms and so you know you're not crazy for getting intervention for them.

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On 2/6/2019 at 7:54 PM, nwahomeschoolmom said:

 He did test as having a gifted IQ this time, even without calculating the GAI score (134).  She said the score was underestimated due to him not being on medication. She just said that the reason he seems to be on the spectrum is the combination of his giftedness and the severe ADHD, but that he did not actually have autism.  She talked about how the stimming is a coping mechanism for him in dealing with the ADHD etc.  Good thing we were thinking it already, but she really encouraged medication.  The first psych really encouraged public school, but this psych was actually complimentary of our parenting and homeschooling and really thought that his ADHD was so severe that she thought stimulant medication was the way to go, even though she generally doesn't recommend it.

It has been our experience that scores increase with meds (and other appropriate therapies--in our case, both kids had developmental vision issues, and vision therapy bumped the scores as well). 

I am glad the psychologist was so supportive. Even if you think he's going to qualify for an autism label down the road, having someone in your corner is very helpful. 

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I'm glad you got some answers. I think it will be interesting for you to note how much the ADHD meds improve -- or don't improve -- the spectrumy issues. Because if it is truly the severe ADHD looking like ASD, then once you treat the ADHD, those spectrum traits should diminish at least some. Right? I'm not a medical expert, but that seems logical. So, if those spectrum traits do not budge while medicated, it might signal that they may not be caused by the ADHD after all.

I'm thinking that I'm glad I am not a psych who screens for autism, because the borderline cases are so tough, and they have to decide one way or the other. My son is borderline but not diagnosed, and one psych said, "well, there have to be some people who are JUST over the line on the spectrum and are not autistic." Those borderline kids sometimes get a different diagnosis later, and I wonder if my son will be one of them whenever we have him retested.

We haven't had the ADOS (yet), and I think it's good that your son passed it. It's so much based on observation, though. And your observations on the screening tools you did caught traits that the psych evidently did not see during the ADOS. It's really tricky to me, because I would not guess that your observations are flawed or invalid, and I would give a lot of weight to what parents observe over a long period of time.  I do hope the meds help with some of those things that you see.

 

 

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Passing the ADOS is great, in terms of social ability.  Just keep in mind that it doesn’t mean he isn’t Autistic, and that Autistic kids who can “pass” have stresses and struggles of their own. I’m thrilled you have something to work on now (ADHD) and things to keep in mind long term (potential Autism).  It’s great to have a plan!

(I’m on watch and wait with my Dd who “passed” the ADOS at 4, but still has Autistic characteristics...  Which she got from me, diagnosed at 38!)

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Thank you all for your responses!  Yes, even though his results was somewhat similar to the eval last year, it was way more thorough and clear and gave us a better plan of action.  And we will know soon enough what happens after the meds.

3 hours ago, Lawyer&Mom said:

Just keep in mind that it doesn’t mean he isn’t Autistic, and that Autistic kids who can “pass” have stresses and struggles of their own

This really speaks to what I fear for my son.  If he can get his stimming and impulsivity under control, and practice/learn some better social skills...it still won't change who he is on the inside and struggles he might have if he is on the spectrum.  (I have my own issues though I'm not sure exactly what they are...so I don't wish that internal angst I felt in my younger year on him at all....)  I guess everyone has to let their kids grow up and struggle though life though, whether they have special needs or not.

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15 minutes ago, nwahomeschoolmom said:

If he can get his stimming and impulsivity under control,

I'm not sure what she was encouraging you to do, but it's not considered best practice to try to supress stimming. I would be exceptionally cautious about this. See what function the stimming serves. (Read book Stop that Seemingly Senseless Behavior) It's ok to set a timer and say hey let's do this 5 more minutes and then we'll move on to this other activity. You might also find his stims rotate. 

It's a pretty hardline ABA thing to tell someone they should not stim, that it's important to stop stimming. It's very controversial. I know a parent who feels that way, that it is socially limiting, looks bad, blah blah. Reality is that kid is on the spectrum, the stimming hurts no one, and it serves a purpose for the dc. For my ds, some stimming can be a stress meter. Like if my ds is stimming a LOT, I really need to be figuring out why he's so stressed and out of whack that he's needing to stim that much. Some stimming for my ds is a sign that he has gone yellow zone and is about to go red. Other stimming is because my ds is HAPPY. Again, none of that is stuff to be supressed, because it's actually serving a purpose for him and helping us know how to help him.

Edited by PeterPan
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7 minutes ago, PeterPan said:

I'm not sure what she was encouraging you to do, but it's not considered best practice to try to surpress stimming.

Sorry, I wasn't clear.. I don't have an issue with stimming.   She didn't really talk to us about stimming, she just thought the meds would reduce it.   I meant under control at inappropriate times/inappropriate places.  Under control enough for him to participate in extra curricular activities etc.  Stimming might not always be the right word, sometimes he might just have really distracting/disruptive behavior.  He was stimming a lot in church, and then we finally realized he NEEDED to be active, so we started letting him draw on a notepad during church.  It actually worked and the stimming really reduced.  So I see your point.  I have no issues with stimming...I think I stim quite a bit.  Sometimes during the sermon at church I press down my fingernails to help me stay still and pay attention, but no one knows I am doing it. LOL.  I guess my son is my son.  

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Like all coping mechanisms, not all stims are created equal.  I think it’s a great idea to stear kids towards more positive and appropriate stims as needed.  (Like I wish someone had helped me when I was a kid.  I had some stims I didn’t feel comfortable/safe with and I didn’t know why I felt compelled to continue them.  Some adult intervention/brainstorming could have helped me come up with better, more pleasing stims for myself.)  I wouldn’t assume that just because the kid came up with a particular stim, that the stim is the best possibility. 

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3 hours ago, Lawyer&Mom said:

 I had some stims I didn’t feel comfortable/safe with and I didn’t know why I felt compelled to continue them

Now we have the Interoception curriculum from Kelly Mahler which can help empower the person in that too.

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The range of fidget to stim is also in the eye of the beholder to some extent as well. My spectrum kiddo has some stims and some fidgets. Fidgeting for focus improves with meds and with not being bored. 

 

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1 hour ago, kbutton said:

The range of fidget to stim is also in the eye of the beholder to some extent as well. My spectrum kiddo has some stims and some fidgets. Fidgeting for focus improves with meds and with not being bored. 

 

Yup, I think we're getting that jumbling in this thread, where maybe the psych is viewing something as a stim that we would call a fidget, etc. I don't think I've ever seen implication online that *stims* improve with meds, but I haven't looked. It's a really interesting question and something to look for evidence for. Meds can improve self-regulation, so in theory it makes sense you would decrease stimming by decreasing the need to stim. 

The ps psych who observed ds described some of his behaviors as "verbal ADHD" or some such thing. It was that attempt to say that what was clearly an autism and language-disability-related stim was just being hyperactive, something he could control, something that would go away with meds. And there is sort of that mentality too, like give them meds, whatever is left is something else (autism, anxiety, whatever). 

Our ped made a really interesting comment about ds that to him the ADHD-like behaviors were due to the sensory disregulation from the autism, not so much ADHD. When you test him on the Quotient (computer tap tap test with lots of monitors) again ds actually does not test as ADHD. But when you get him in a room with people, they're like oh wow so ADHD, please put him on meds. It's just interesting to ponder. We did some tyrosine on him (to bump dopamine levels) and he did seem to improve. Then it seemed to undermine the other stuff (5htp, etc.) and his behavior got worse. I don't know, I just ponder it.

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Yes, I've found it tricky to distinguish between stims, fidgets, sensory-seeking behaviors, and tics in DS14.

Some of these things diminished or changed over time. He is less obsessed with sensory seeking when on ADHD meds; his whole system is just calmer (however, certain stimulants did exacerbate tics).

DS never did hand flapping or other large movement behaviors that might appear to observers to be stims, but he has always had various small, sometimes unusual repetitive behaviors. Stims? Sensory seeking? Tics? Very hard for me to categorize them exactly.

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I am just going to echo that diagnosing kids with complicated issues is equally complicated. We went through "not autism" but __________.  Over the yrs our ds was given an alphabet soup of labels by psys, most of which we knew as parents were wrong.  Be open to the fact that you might know more than the psy. 

Fwiw, our ds was ultimately labeled autistic.

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