ASD evaluation: What to expect?

[purpleowl]

DS (age 6) is being referred by his pediatrician for an evaluation. She suspects that he is on the high-functioning end of the autism spectrum. I am glad we're taking steps in this direction, but I'm also realizing how little I know about the process.

So, can any of you who've traveled this road tell me what happens? What should I expect for the evaluation? What should I tell DS to expect? What kinds of information will the results give us? What questions should I be sure to ask? 

Thanks in advance. 🙂 

[purpleowl]

Thank you so much @happysmileylady. I'm not sure my 11yo would know how to answer a phone, for the same reasons! (I mean, it says "swipe up to answer," so she could figure it out. But she wouldn't be able to tell you the process ahead of time.)

I know that the place she's referring us to is 2.5 hours away and I *think* she said it would be all completed in one day trip, though I may have misunderstood. But I will not be surprised if it takes months to get on the schedule, especially while covid is going on.

I kind of assumed that the diagnosis would give some direction in figuring out next steps, but just "yep, ASD" wouldn't be helpful for that at all. So I'll need to make sure I ask about next steps. 

[purpleowl]

So @happysmileylady, would you say that going through the process to get a diagnosis was not worthwhile?

[Terabith]

We went through like four ASD evaluations.  There were a million surveys/ forms for us to fill out and forms for teachers to fill out.  Most of them included an IQ test and an ADOS, which was like a structured play date.  There's often a picture book, where they ask the child to tell the story from the picture, a lot of charades/ acting out of situations (birthday party, brush teeth, etc), some playing with toys.  I think there was a snack, because one evaluation said that the fact that she offered to share her crackers with the examiner was startling and proof she could not be autistic.  Once there was a GARS, which was a structured interview with me.  A couple of them also involved speech and OT evaluations.  

They all came up with....she's sure quirky, but it's not autism.  

When she was 11, a psychologist said, "Look, I know all these evals have said not autism, but this is the DSM definition.  She CLEARLY meets it and here is why."  Which....yeah.  I'd been saying since she was TWO.  So, all the evals were kind of pointless for us, but I do really think the autism definition is accurate in our case.  

We did get useful information from evals.  We found out she's highly gifted and that she had the vocabulary of a graduate student by the time she was 8.  We also found out that she has learning disabilities.  Both of those things were useful in parlaying when dealing with the school, because her achievement wasn't low enough to qualify for an IEP until they looked at her IQ and language skills.  She has some sensory issues but nothing at all debilitating.  It was really helpful to know that she has pretty much no working memory and a low processing speed.  She has a lot of anxiety, but it was helpful to know that in addition to "brain chemical" anxiety, the anxiety made the ASD symptoms way WAY worse, and it also helped to know that part of why she had anxiety is because of the mismatch between intelligence and effectively no working memory.  

The ADOS is really rather fun.  Both my kids have done it, and my autistic kid has done it like four times.  It was thoroughly enjoyed every time.  There will also be a variety of questions about what they like to do, what they are scared of, general kid and sort of structured interview questions for them.  If they do IQ, it will be puzzles, some blocks, maybe mazes, etc.  Kind of like school but more puzzley.  

[purpleowl]

That is helpful, @happysmileylady, thank you.

@Terabith, that's good info to have. There are definitely things about DS that I worry will make someone say "clearly it can't be autism." For example, he is fine with making eye contact, and his speech is not "flat." But then there are other things that seem to me like a big neon "ASD" sign. (Side note: My initials are ASD, and it's very weird to keep using them to mean something else, lol.)

Both of you mentioned teachers needing to fill out forms. So now I'm wondering if we will run into snags since DS is homeschooled. Like, will they say "we can't evaluate without input from multiple people/settings"? I guess I'll find out.

[Terabith]

9 minutes ago, purpleowl said:

That is helpful, @happysmileylady, thank you.

@Terabith, that's good info to have. There are definitely things about DS that I worry will make someone say "clearly it can't be autism." For example, he is fine with making eye contact, and his speech is not "flat." But then there are other things that seem to me like a big neon "ASD" sign. (Side note: My initials are ASD, and it's very weird to keep using them to mean something else, lol.)

Both of you mentioned teachers needing to fill out forms. So now I'm wondering if we will run into snags since DS is homeschooled. Like, will they say "we can't evaluate without input from multiple people/settings"? I guess I'll find out.

Cat was homeschooled during all but one of her evaluations.  We had a preschool teacher do it one year, since she was attending preschool.  We had a music teacher fill it out at least once, which was really not optimal, because they didn't see a lot of issues, but it was the closest I could get.  

[purpleowl]

1 minute ago, Terabith said:

Cat was homeschooled during all but one of her evaluations.  We had a preschool teacher do it one year, since she was attending preschool.  We had a music teacher fill it out at least once, which was really not optimal, because they didn't see a lot of issues, but it was the closest I could get.  

I do have teachers and coaches from activities that I could ask if needed. Piano teacher and choir teacher would both be good options, probably.

[PeterPan]

12 hours ago, purpleowl said:

For example, he is fine with making eye contact, and his speech is not "flat."

Here's the thing. He's doing that with you, and that doesn't mean that's what he does with strangers.

For the evals, do NOTHING. Don't tell him what's happening, don't tell him what to wear, don't brush his hair, NOTHING. Just let him be himself. The point of the ADOS, if your psych does that, is to get an objective measure of how someone reacts to a series of situations. 

11 hours ago, purpleowl said:

I do have teachers and coaches from activities that I could ask if needed.

There are different kinds of evals for ASD, so you can ask what they'll be doing, whether they'll be doing an ADOS. Not everyone is trained on the ADOS even though it's an exceptionally helpful tool. Without it, as you say, they're limited to paper questionaires and whatever they happen to see randomly during the sessions.

Clinical psychs will typically spend 1-2 hours eval'ing but evals can run 6-8 hours or even be over multiple days. It just varies with the type of psych and what they're doing. Often the evals where they do the ADOS take so much time that they *don't* spend a lot of time digging in looking for say learning disabilities or doing really detailed language testing. So for some kids it actually takes multiple evals to sort everything out. 

If the question is ASD, then getting a good eval that really focuses on the ASD is worth a lot. You're asking what's next, and they'll guide you. The "high functioning" thing isn't very helpful, because technically it refers to IQ, which they then imply/assume means someone needs less support. Current DSM says to assign a SUPPORT level. A dc needs support, significant support, or very significant support (1/2/3). My ds has a high IQ, leading people casually to say he's "high functioning," but reality is he needs SIGNIFICANT SUPPORT. So IQ and support level are not the same. We have other kids on the board in this boat, with high IQs but needing significant support. 

https://www.socialthinking.com/Articles?name=social-thinking-social-communication-profile  This article might be helpful to you in understanding different profiles, how they're approached for support/treatment/intervention, and what the long term outcomes are. 

I'm with you that just getting the label isn't very helpful, because then it's the now what. Some of the things weren't completely apparent on my ds at age 6 because they were maybe excusable by the age. He became very strongly discrepant about two years later. So probably you're seeing some issues but he's so bright that he's compensating/coping. I can tell you things that have been good for us.

-Social Thinking--They do workshops and have excellent materials. Your ds is a great age to be doing We Thinkers 1 and 2.

-Interoception--Kelly Mahler's work on this is pivotal, highly recommend. 

-Zones of Regulation--Do this after working on interoception.

-bringing in a behaviorist--Now they really vary, and with my ds we were using sort of an umbrella ABA person, meaning we called it ABA but it wasn't strict ABA. She helped me see a lot of issues and work through how to approach them. She raised the bar on what we expected and showed us how to get there.

-structure--We use an office with my ds and use very clear, predictable structures.

-music therapy, speech therapy, etc. 

Basically I get trained on everything I can, lol.

Back to evals. Homeschoolers asking people to fill out forms is so fraught. Those people see him 30-90 minutes at a time in very controlled situations that are generally for preferred activities. They completely miss behaviors that occurred before/after, don't know what happens in less preferred settings, and just aren't with him long enough (4-6 hours a day daily) to see stuff. They see bits, but they don't see enough to have it confirm things on the forms. BTDT so so so often. So don't do it, don't fall in the trap.

If you get a psych who is skillful on the ADOS, they can see it for themselves. You need someone to spend enough time with him that whatever you're seeing at home happens with them.

And, fwiw, kids are surprising. My ds would have fine eye contact with me and totally drop with the next person. He talks with me, but then someone will come in my house and he'll converse only in echolalia for 20 minutes. I kid you not. It's why the psych needs TIME and needs to work with him on their terms, working through objective situations like the ADOS where they can compare to other kids and go wow that was really off the planet.

I hope your evals go well. It's a start. These psychs are not omniscient. The first evals we did with my ds at 6, the (I have no nice words and I try not to use profanity but his guy DESERVES it) blamed me, I kid you not, told me I shouldn't teach my kid, said there were SLDs and ADHD and no ASD, and that flapping his arms and reciting pages from books was simply because he was so gifted.

Turns out everyone now agrees (including an entire IEP team and multiple psychs) that my ds has ASD2 with significant language disability. He FAILS significant language tests. But according to that psych, zilcho. Because, you know, he was a neuropsych and some people are just annointed and know. I don't know. He didn't spend time, farmed out much of the testing to assistants, DIDN'T SPEND TIME, and DIDN'T LISTEN.

So if the guy doesn't listen, cancel the appointment. That's the moral of the story. But if he listens, hopefully you can sort some stuff out. You'll get through this. Just be gentle with yourself.

[purpleowl]

Thank you so much, @PeterPan! You've given me a LOT to process, and I appreciate it.

I'm struggling with this part - how do I not tell him anything? I mean, we're going to have to drive (2.5 hours) to an appointment. He is going to ask me what's going to happen, and what's going to happen after that, and what's going to happen after that. I am okay with not being able to give all the specifics, but it seems like I need to tell him SOMETHING? Like, we're going to a special place where a person, or maybe a few people, will talk to you and play with you? Would that be okay? I don't want to mess up what they will see, but also, preparing him for what's coming is such a habit that I don't know how to not do it. I can deflect follow-up questions ("I'm not sure. We'll find out when we get there.") but I feel like I need something that I can say to him. 

I know the pediatrician mentioned ADOS as something they do at the place she's referring us. When we actually schedule it I can ask.

I guess I have misunderstood the "high-functioning" label - I thought that that was the same as saying level 1 support. I didn't realize it was referring to IQ. I really don't know what DS's IQ is. 

I will read that article you linked and then work my way through the other things you listed. I have so much to learn and it's very helpful to have a plan of attack, lol!

Re: forms from other people - my first choice would be not to have them, so hopefully that's possible.

[Lawyer&Mom]

My kid was diagnosed with ASD by the same doctor who diagnosed me, at the same practice where my husband had had other evaluations done.  So I just told her she was going for a check up with a brain doctor, just to see how things were working, this is totally normal, Mom and Dad have had brain check-ups too, no big deal.

She had fun, we told her she did a great job, and we never talked about there being any results, and she never asked.
 

(We have talked to her about her brain being different, like Mommy’s brain is different, but we haven’t formally labeled that difference yet.)

[purpleowl]

Check-up with a brain doctor sounds good, though I'll have to reassure him that there will be no shots and no throat swabs. 😉 Thanks @Lawyer&Mom!

[PeterPan]

2 hours ago, purpleowl said:

I am okay with not being able to give all the specifics, but it seems like I need to tell him SOMETHING?

Oh absolutely! I just mean like don't google the ADOS and find out every single thing and TELL him, kwim? You just tell him normal things: You're going to meet a doctor who wants to get to know how you think. They'll tell us more about how you learn best and how we can work with you better. 

2 hours ago, purpleowl said:

I guess I have misunderstood the "high-functioning" label - I thought that that was the same as saying level 1 support.

That's an interesting take. It's an older term, so you hear it a lot. But it's kind of discriminatory, which is why it bristles some people. I'm kind of sensitive, because I would get that from people about my ds "Oh, he seems so high functioning!!" and it was a way of blowing off the serious challenges we were having.

2 hours ago, purpleowl said:

Re: forms from other people - my first choice would be not to have them, so hopefully that's possible.

They usually mail them ahead of time if they want them. If they don't, then odds are they're a hospital (yes?) and going to do the ADOS and spend enough time that they feel like they'll see it for themselves. The best thing you can do is collect questions you have and data points you think they might not see that are significant. I had someone tell me not to go through the criteria to find those things, but that's hogwash. You have the most data of anyone in the world on him, so bring that data. If nothing else, bring your list of the supports you provide him.

 

54 minutes ago, Lawyer&Mom said:

we never talked about there being any results, and she never asked.

Yeah, my ds has never asked either. 

Edited June 26, 2020 by PeterPan

[purpleowl]

53 minutes ago, PeterPan said:

 That's an interesting take. It's an older term, so you hear it a lot. But it's kind of discriminatory, which is why it bristles some people. I'm kind of sensitive, because I would get that from people about my ds "Oh, he seems so high functioning!!" and it was a way of blowing off the serious challenges we were having.

Somehow I have ended up with 13,000 things going on so I can't respond in depth right now, but I wanted to say that I didn't intend to be discriminatory by using that term. Please forgive me if I've caused offense, and thank you for letting me know how it can be perceived.

[PeterPan]

3 hours ago, purpleowl said:

if I've caused offense,

Oh mercy, you didn't offend me.