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nwahomeschoolmom

Question on ADOS

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My 6.5 yr old son is having ADOS testing (with IQ test) early next month for the first time. The psychologist mentioned wanting me to offer my son a reward for after the testing, I'm assuming to incentivize cooperative/good/his best behavior?  What would be her reason for this?  Wouldn't she want to see how he acts without a huge incentive?  Of course, I don't know how the ADOS works...

Edited by nwahomeschoolmom

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Okay, here is the thing.  

If your child doesn’t participate with the testing, then you don’t exactly walk out with much more besides “he didn’t participate with testing.”

Yes, that’s some information.

But you would have a lot more information if he DID participate with the testing.  

Here is the other thing.  This is autism testing.  Offering a treat for afterward is *generically* something that does work well with a lot of kids with autism.

Does that mean it’s effective for your kid?  Does that mean it’s productive or counterproductive for your kid?

You know that more than anyone. 

But for a lot of people it would be a reminder of a good strategy.  

Does that apply to you?  Maybe it does, maybe it doesn’t.

It’s okay either way.

I get comments/reminders like this, and some apply to me and some just do not.  But for the ones that I disregard as not applying to me — I recognize that they are things that are very useful to many people and helpful reminders to many people. 

But it’s okay, it doesn’t mean people are putting my son in a box and assuming “this is what this mom needs to do.”  I have “felt” like that and just not found it to be the case 99% of the time. People are capable of making distinctions, listening, and seeing the child in front of them.  

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I will say though — I am assuming your son is verbal.  

He needs to participate in the testing because for you not to have questions like “is this accurate?” afterward because you don’t want to think “well usually he would have done this and that” and not know if it was just a lack of participation. 

It is also something where — there are already enough doubts about accuracy with a child going into a new place with a new person.  And that tends to be pretty built-in already.  

But yeah — if your child doesn’t participate, while it provides some information, it won’t provide the same quality of information as if the child does participate.

My son has really not participated in testing when he was younger, and really, they just can’t tell you as much!  They can say some observations.  They can say things they notice about the particular way the child didn’t participate. 

But it lacks a lot.

It is also very frustrating to question results because “that’s not how my child usually acts” and not know if that is within the built-in level of “new place/new person” or if it’s more than that, and then if it’s pretty reflective of a child, or more just how a child acted on a particular day.

Really this leads to a lot of people doubting the accuracy of results!  

I think to a great extent this is just part of the process and can’t be helped.

But to the extent you can help it by doing some strategy or planning ahead or preparing a child to participate in the testing — I think it is very worth it.  

Just my opinion! 

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For context though — there is really no doubt of my son not having autism.  I don’t worry about that with testing.  

So then — I want to get what information I can!  I want to feel like results are as accurate as possible!

If you are more concerned about maybe your child doing particularly well and then not being diagnosed and having that be what you wonder about later — I can’t say.  Then I would see what others say who have been more from that direction.  

 

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I am going to add.... for IQ testing.... my son didn’t participate as a young child, and he got marked wrong from lack of participation.  They can basically just not score the test and instead write down their observations.  Or they can score it with counting things incorrect that were not responded to.  

Or those have been my two experiences.

There are test guidelines for a lot of tests that limit how many prompts can be given.  It seems to often be two prompts.  I have often heard “I think he knew more answers but I wasn’t able to give another prompt.”

It is really good information in its way, but it is also very lacking!  It provides information about how my son will act in the situation of taking an IQ test.  It doesn’t provide such good information about his results.  

Good luck though!  I hope you get really good and helpful information!!!!!!!!!!!

I think on the bright side — ime they can tell a lot from kids even if there is not such good participation.  That is a good bright side.  

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FYI -- this is my understanding.... there are different versions of the ADOS for different ages and different language abilities.  If your son is verbal he is probably going to have a version that expects language use.  

My son has done the ADOS twice.  The first time right before he turned 4, and he took (my understanding) the toddler/pre-school version, he wasn't expected to talk for it, they knew from the phone interview not to expect him to talk (I guess).  Then he took it again last year when he was 9, and this time he took a test where he was expected to talk.  

It is a big difference to be expected to talk, or to just be looked at to see how you respond to someone trying to play with you.  But what is appropriate is different depending on age and language.  

Spectrumnews.org is a website I visit probably weekly and it has articles about the ADOS.  That is where I have the impression that there are different versions of the test.  

It meant a lot to me that my son had a good day for the first time he had the ADOS.  It made me a lot more confident in the results.  It can be easy to doubt results and think "that was a bad day" and it can also be easy for kids to have bad days and for that to make the results less representative.  Though -- even on a bad day there are things that can be noticed I think.  

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We've had treats after testing in most locations. Testing is hard work for kids' brains and mine, at least, have loved some kind of reward for making it through the slog.

We had bad results in 3rd grade because my son had a meltdown during academically hard tests (he has a huge perfectionism streak).  While the report said that testing couldn't be completed due to non-compliance, it did not state that the non-compliance was because the material was difficult for the child.  For hereverafter, I have had to explain the issue because the testing that was completed showed he was on level. It wasn't until this past year, when ds finally had the social skills to work through really hard & frustrating (to him) stuff that we could show that his performance is below 1% for his age norm in a few key, narrow areas. I knew it, but the non-compliance issue meant that I couldn't prove it.....and mom's word is often blown off unless there are test results behind it, iykwim.

So, seriously, I don't think the psych is giving bad advice here. Whether the child performs below their academic level when they're not motivated is a completely different issue than trying to get a baseline of what they are capable of achieving at all.

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I think you should get a 2nd opinion on this. Does this person have a good reputation? The ADOS is supposed to be a standardized tool, and they're supposed to be coming in as they really are. So what fool good does it do if you amp him and he's his angelically best self? No good. If "offer a reward" is not part of the standardized expectations, then why screw with it?

And what good would a reward be anyway? Done right the ADOS is a pain in the butt and fatiguing and meant to provoke behaviors by putting them in situations where they're supposed to do things they struggle to do. My ds was a hot mess, a total crapball, after he came out of there. All he was fit to do was shove in a car and leave. If a dc is coming out well enough to participate in a reward, then that tells you something. And if the dc's behavior improves with a reward, that tells you something.

The whole idea of the ADOS is that it's standardized. Someone who has never met the kid meets him (gathering data), goes into a room (gathering data), and goes through a list of specified tasks (gathering data). So WHY would you screw with that? So I call horse feathers and I'd be looking for another psych. You don't screw around with a tool that is supposed to be standardized.

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21 hours ago, prairiewindmomma said:

the child performs below their academic level

Yes, it's ok to use motivators for this. But not the ADOS. 

There are people who are more experienced and there are people who are a waste of time. This is not something to rush into. I used someone who lectures at a university, someone who trains post-grads, someone who was an expert. The last thing you need is some idiot making the issue even more confusing.

You can play up the day they do academic testing and use motivators, but you should NOT be telling him what is coming with the ADOS or altering that in any way.

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When we went last year for my son to get an updated ADOS, he was 9.  It's hard for me to say exactly why we needed to do it, it was a bit of a hoop to jump through, and it's hard for me to even know...... basically it's some combination of the insurance wanting it, and the pediatrician wanting it, because they need "official" things and won't just look at his other records (where it is very validated that he has autism).  For what they will look at, they would look and see he had been diagnosed at 3 (but right before he turned 4) and then they would look at it like they couldn't say for sure he would still be diagnosed.  

Anyway -- we went to have him diagnosed.  I took my big bag with my big binder and information.  

The woman we talked to said she thought it looked like his current programming was very appropriate for him and "what did we want to get out of this appointment."  We said -- we do this insurance paperwork thing and they seem to really want us to do it, and that had been going on since he was 7 or so, and they seemed to think just having an evaluation from when he was 3 (but almost 4) was not good enough for them.  

So that is background, lol......

Anyway -- we had an hour drive.  Parking was easy.  We had a 15 minute wait in the waiting room (but we were there a little early, too).  The waiting room was very easy.  We had an easy transition back into the office.  The lady seemed nice.  Iirc she looked at his previous diagnosis, his current IEP, and I told her about his ABA therapy.  But she looked at my big bag and thought I seemed like an organized person, lol.  

So then she said she would just do the ADOS since that seemed to be what was appropriate for us.  

Then at that point -- it took about 45 minutes.  

It really went fine, there were no problems.  It seemed very child-friendly to me.  My son is verbal, I don't know if he did a version for a younger child, it is possible.  He does have a language delay, and that would be reflected on his IEP, which she did look at (and that has speech therapy testing on it, and it has IQ testing on it).  

Then we went to her office and talked a few minutes, and then my husband asked her about restaraunts we could walk to.  Then we walked to a restaraunt.  Then we walked back to the parking garage and drove an hour home.  

Anyway -- it was fine!  

This is a stark contrast to our first one, which involved my aunt, uncle, cousin, and mom driving 5 hours to stay with me.  My husband being deployed overseas.  The appointment being at 8:00 AM several hours away, so my mom and I drove the night before and stayed at a hotel.  Then we had several things done between about 8:00 and 11:00.  Us and a few others went round-robin through a doctor, a speech therapist, and someone doing autism testing (but it was all for autism).  Then we stayed maybe 30 minutes in a waiting room, then we went in and were told my son had autism.  Then we drove home.  And then it turned out ----- my other two kids were acting out with my aunt and uncle at bedtime, because they were jealous they didn't go on the trip, they thought my mom and I were just taking my son for a special vacation, while leaving them at home to go to school!  Anyway -- I had done a long phone interview for that, gotten a doctor referral (required), and when we got results he had done the ADOS and CARS-2 and a Bailey scale (off the top of my head).  Part of the time we were having a parent interview, while we could see my son through a window, but we weren't in the same room with him, and I think that is when he was doing the ADOS.  

That went well but was very, very, very draining.  

So anyway ----- it's hard to say how it will go.  It varies a lot by kids.  But it definitely was easy for us last year when my son was 9, and we were *only* doing the ADOS.  

 

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I'll add for our recent one (ADOS) with a 9-year-old.... my husband and I sat behind my son in little chairs, he sat across from the evaulator with a little table between them.  So -- we were in the same room with him.  

It just happens that my older son had neuropsych testing when he was 9 also.  That included IQ testing and I think an ADHD test?  I was never in the same room with him.  I think it took 2 visits, but she was flexible to letting us come in for a shorter time if it was going to be a problem for him to do too much at one time.  But it was no big deal for him not to be in the same room with me.  

But for my younger son doing the ADOS when he was 9, we were able to sit behind him and watch the whole thing.  

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2 hours ago, PeterPan said:

 Done right the ADOS is a pain in the butt and fatiguing and meant to provoke behaviors by putting them in situations where they're supposed to do things they struggle to do.

 

I don't think this is the case.  I agree it probably does provoke behaviors for some kids.  But I don't think it is meant to provoke behaviors or that it is about showing bad behavior.

This is something I think is important to keep in mind ------ people are not all using the word "behavior" in the same way.

Some people say "behavior" and they mean what could be called bad behavior or challenging behavior.  Difficult behavior.  That kind of thing.

Then other people say "behavior" and it does NOT mean whether kids were acting well-behaved or not.  It is just what they do.  I think it is any observable action.  So something can be observing a child's behavior, but that doesn't mean it's looking for them to behave poorly or be difficult or anything like that.  It's just looking for how they will do some things.  

 

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Elicit. They want to see the response and they want to be able to compare it to the scoring criteria. So you don't want to be shifting that by telling him what to do or altering. You just want to let him be who he is.

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Just because professionals are doing something doesn't mean they're doing it right or following best practice. How are you supposed to have a standardized tool if sometimes Mom is in the room, sometimes not, etc.? That's absurd. 

People are NOT necessarily following the protocol. The level of training and understanding varies. Or as the psych we used put it, you grow in understanding the ADOS.

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Well, I got the piece of paper I needed for my son to have his insurance stuff go smoothly.  

But I don’t think it was a problem for us to be there.  It was easier on him, but he did everything by himself and his back was to us.  

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I guess my take is — for the one last year, we probably had an hour slot from 11:00 to 12:00.  That is not much time to build a rapport with a child.  I think doing things within reason to help that 1 hour be as productive as possible is reasonable.  

For me seeing the tasks my son did — he just did them the way he would do them.  But he was comfortable and I think it helped him.  

But no behaviors were provoked, in the sense of seeing if he would have a behavior issue.  He did not.  He just did the tasks as well as he could, which is to say, how he normally would do them.  

I think she probably thought he had autism just from seeing us in the waiting room, though.  I felt a little like she was observing how we were in the waiting room and how we transitioned over to her, greeted her, etc.  But I might be paranoid.  

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21 hours ago, Lecka said:

I think she probably thought he had autism just from seeing us in the waiting room, though.  I felt a little like she was observing how we were in the waiting room and how we transitioned over to her, greeted her, etc.  But I might be paranoid.  

This is EXACTLY what they're doing!! They're using that greeting, the interaction, the walk back to the room, etc. to gather data, because it's a first time meeting, totally standardized (same every time, kid doesn't know person, kid has to reply and comply and come back). That's what I was talking about standardized. So having you there for that walk alters the situation. It got you your paper, but for a first time eval with having it done correctly is ACTUALLY IMPORTANT you wouldn't want that. And you don't want someone who's not knowledgeable and meticulous doing it, not when the question is this important.

 

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I still think it’s fine.  If you know for a fact it would be considered to invalidate the test — then that is different.  I wouldn’t expect it to.  

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I don't know the answer on invalidating, but I can tell you the psych we used teaches post-doctoral students and she was METICULOUS. She never would have allowed that. But we're talking splitting hairs on really hard cases.

Edited by PeterPan

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I guess it’s not ideal, but we live in a part of the country where there aren’t many options.  I don’t really want to get on a children’s hospital wait list for a super complete evaluation due to the the cost and long wait.  Also, I met someone that did that and afterward they told her that her son “may or may not be autistic.”! What a waste of time for her!  I like this lady.  Maybe she got worried when I showed skepticism that they could complete testing in the allotted time because of issues with his first testing.  She seemed confident when I talked to her and then she met with him for about 10 minutes...maybe that scared her.  I’m glad she got to see how he is at the very beginning.  When she introduced herself to him he started jumping all around her office because he was so excited...and she was like “is this normal for him” and we said yes.

 

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