Conquering D-Day
Show notes for Embracing Autism Podcast — Ep 103

Introduction:
Lia: In this episode, we discuss what to expect at your child’s autism evaluation and compare the benefits and disadvantages of an in-person evaluation versus a tele-health or virtual assessment.

Lia: Welcome to Embracing Autism, a podcast for parents of autistic children seeking advice and support while spreading awareness and acceptance of Autism Spectrum Disorder.

Lia: I’m Lia.

Matt: And I’m Matt!

Lia: And each week we will discuss our journey with autism and talk about how to embrace your child’s individuality while providing guidance, tips, resources and sharing our personal stories.

Lia: This is-

Lia & Matt: Embracing autism!

Discussion:
Matt: If you’re like most parents of autistic children, you probably waited months, if not years, for this very moment, the day that your child finally gets their autism evaluation. And if you haven’t gone through the process before, you’re probably not really sure what to expect. You might feel a little anxious, and just uncertain about the day overall, especially if you’ve had to do evaluations remotely due to COVID-19. So I’m actually gonna have to bow to this conversation a little bit, because unfortunately, I was babysitting our youngest child, and Lia was the only one who actually took part in diagnosis day. So she will be able to give her first-hand accounts of the day. And Lia, you can take it away from there.

Lia: So I first want to talk about the in-clinic in-person evaluation. And this is an evaluation that’s done for toddlers or children; an adult evaluation will look different to this. But for this episode, I’m just going to talk about essentially what you will see for a child or a toddler, in the in-person clinic evaluation, depending upon your location and who you go to, this could be a one-day or two-day evaluation. So typically, it’s a one-day evaluation if you’re just seeing one physician, like a Neuropsychologist or a Developmental Pediatrician, but if you see a team like we did, then you will be seeing approximately anywhere between two to four clinicians or physicians and that makes it longer so it’ll take a two-day time span in order to complete that evaluation. So during this evaluation, you can be expected to be asked a lot of questions. These questions will be basically things about your family’s medical history, as well as your child’s medical history. You might be asked questions about your child’s birth. So you might be asked things like Were there any complications during labor? What was your child’s Apgar score? Did your child have an extended stay at the hospital, things like that, and it’ll be kind of an interview-style questioning line. Once that interview-style questioning is done, though, the physician will then switch to observing your child.

Lia: I will say though, the questioning does take quite a bit of time, a lot of times prior to the meeting, they will have had you fill out a form online or they might give you a paper form that actually took quite a bit of time, it took me probably somewhere between 20 to 30 minutes to complete because it was around 80 to 100 questions when we did that. So essentially, you’ll fill that in. And then those are questions that the physician will go over with you during the appointment. But they will likely also add additional questions to that. Or they may ask for clarification on those questions.

Lia: So once the interview-style questions are completed, then that’s where the fun starts for your kid, then it’ll switch to child observation through play. The physician will put some specific toys in front of your child, or it may be an Occupational Therapist that does this. It might be a Physical Therapist, it just depends on who you’re going to see. But they will put down very specific toys in front of your child and ask them to complete certain tasks. One of those tasks for my child was ‘can you stack the blocks’? So they would put out a couple of blocks in front of her and they would just enthusiastically be like, “Well, can you stack the blocks? Can you stack the blocks?” And then pause and kind of observe her reaction. So they want to see if your child is responding to the question — Are they acknowledging them? Or they’re giving them eye contact, things like that. And so if my child did give them eye contact, they would take a note, if she didn’t, they might take a note on that as well. If they don’t do what they would expect them to do, then they start doing a little bit of prompting. So some of the prompting might be that they tap on the blocks. For example, they might tap on the blocks to see if that gets your child’s attention, they might start stacking the blocks themselves and just see if your child will then join in and try to keep stacking blocks with them. So it’ll just differ between each physician what they may or may not try with your child. But essentially they’re just trying to see if that child is able to understand the instructions, if they’re able to complete the directions, if they’re engaging with them or not.

Lia: There’s a lot of other fun activities that they’ll do. So for example, they will blow bubbles and try to see if your child will ask for more bubbles. So one of the activities that they did is they dip the wand in the bubbles, they’ll blow as your kid is popping the bubbles, playing with the bubbles and then they’ll close the jar and put it down and see if your child will then pick up the bubbles, bring it to them, ask for more bubbles or if they will just turn around and start looking for something else to do or if they get frustrated because they want more bubbles but they’re not able to communicate that they want bubbles. They’re really just trying to see how your child socially perceives getting more bubbles how they communicate it and try to see if they will then respond if they try again. So they’ll then see, “okay, let me try dipping the bubbles again and blow again”, and then see if that child continues to do the same behavior or if they do something different.

Lia: Another activity that they did is to look at pointing. So for example, they might have a star or a picture or something cute on the wall. And they want to see if your child can follow a point. So they might say, “look at the star” and they’ll point to the star. They’ll see if your child is able to follow that point. And if they also look at the star, if it doesn’t work the first time around, then they might try it again. But this time, they’ll move their head and eyes as well, so that their entire body is essentially pointed to the star. So it’ll be like “Susie, look at the star.” And they’ll move their entire body, their eye gaze, their head and their hand to point to the star. They’ll see if your child then reacts with the additional prompt or if the child still doesn’t follow the star. Sometimes children will struggle to find the star, but still find it, sometimes children just don’t engage at all. So they’re going to be observing for that and try to kind of copy down whatever the range of their engagement is to help them with the diagnosis.

Lia: They may also just generally observe your child. So I know for my child, each of my children has different stims that they do, self-stimulatory behavior. And so for example, one of my children really, really likes to spin or she’ll kind of wiggle her fingers. So they’re just generally observing your child for those sorts of behaviors. My other child didn’t do those. But she did do the thing where you kind of look out of the corner of your eyes instead of looking directly at things. So they are going to observe your child to see if they check off any of those types of behaviors from the list. If your child does, they’ll make a note of that. And that’s part of the diagnosis procedure as well.

Lia: They will also be paying attention to your child’s language. So I know with my child during the evaluation, at that time, she was pretty much nonverbal, the only thing she really said at the time was colors to describe items. So if they had a rubber duck, she would just say, “yellow, yellow”, and she would essentially say yellow, but she would just be announcing it out to the room. So she wouldn’t be joining in attention with any of the adults in the room. That’s another thing that they’re going to look at during the evaluation, they’re going to see, does your child actually communicate what he or she is playing with? For example, if they have a toy truck, do they then hold the truck up to the evaluator or to the parent who may or may not be in the room and just ask them, “truck, truck, truck?” Something like that. Or do they just have the truck on them and just play with it or fiddle with it and essentially not even bother to engage with other people in the room, that’s something that they’re going to be observing as well.

Lia: Sometimes they also look into what they consider appropriate play. What a physician will consider appropriate play is, for example — is the child pushing the truck back and forth, or is the child holding the truck upside down and spinning the wheels? If there are other toys in the room, is the child playing with those toys in a way a typical child would or is the child taking those toys and lining them up?Things like that. If there’s anything that essentially is atypical of the child’s behavior compared to the general public, those are things that the physician will essentially observe for and make notes of.

Lia: So this process is pretty self-explanatory, it’s pretty easy. Again, it’s just an interview and observation of your child. Some physicians, if you’re just seeing a single Developmental Pediatrician or Developmental Psychologist, you may be able to get preliminary results at the end of that appointment. This is typical if you’re doing a one-day evaluation. So if you’re just seeing that one physician, then you’ll probably get a preliminary result right then in there. However, the full report is usually not available until two to three weeks later. Now, like I mentioned before, that is just the one-day evaluation with just a physician or Pediatrician/ Neuro Psychologist, if you do the full panel evaluation, as was the case for our children, that will actually include a Developmental Pediatrician or Psychologist, an Occupational Therapist, Speech Therapist and potentially a social worker or some other social support person. Because that evaluation has a little bit more people involved, it will be a little more complex. So for example, in this case, the Occupational Therapist will be the one who is going to be engaging with your child in the play activities. They will be essentially assessing fine motor, gross motor, social and other skills, while your kid is actually just sitting there playing with toys and having fun. Now, as I mentioned before, this type of play will usually include imaginative play assessment. So things like asking your child to have a pretend Tea Party, but they’ll also do things for fine motor skill assessments. So that might include tasks such as coloring or putting coins in a piggy bank things that would essentially require those detailed fine motor skills. They’ll also take a look at certain milestone evaluation tasks. So they’re gonna want to see if your child is reaching age-appropriate milestones. So are your child’s reactions age-appropriate for the task at hand?

Lia: And now as a side note, you’re typically going to be allowed to observe or sit in for these evaluations. In some cases, as well as for me, I was actually able to participate in some of it. So if you see that your child is getting fussy with a therapist and isn’t willing to engage, if you have a nice therapist like I did, they’ll actually just ask you like, “Hey, you can try blowing bubbles with her and see if she’ll do it for you?” So sometimes it’ll be more hands-on but typically, the in-person evaluation is a more hands-off approach for the parent, and it’s more hands on for the therapists and physicians. After this, the results will then be discussed with the rest of the team, which also includes a Speech-Language Pathologist. Now the Speech-Language Pathologist is going to evaluate your child’s ability to communicate both verbally and non verbally as well as their ability to engage socially. So this is the person who’s going to be doing that eye contact task that I mentioned before, they’re the ones that are responsible for asking if a child can follow a point, they might do that pointing to the star on the wall, they might also try to rule out any sort of physical problems that might be a cause for potential language delay. So they might take a quick look and see if your child has any tongue ties or anything physically abnormal with their mouth to see if maybe that’s the reason your child is not talking rather than autism.

Lia: Now, they also play games with their child. So my child with the Speech Pathologist was actually doing a bubble popping game. So the Speech-Language Pathologist would say “Pop, pop!” every time she would pop a bubble, and then would evaluate to see whether or not my child would say the word or she needed prompting to follow the cue or if she just wanted to say it at all. My child was actually pretty nonverbal at the time, so she did not say pop.

Lia: Now, once the team finishes their evaluations, again, they’ll get together to finalize the recommendations, which are going to be sent to you a few days to weeks later, just depending on the facility and team. The best part of teams is that they also include social workers who can actually help you navigate resources for your child. Once you’ve gone and seen the physician and both of the therapists, then you’re typically directed to a social worker or some sort of social contact who will help you with this. Our social worker actually directed us to many community resources. And this included things like support groups, the local infants and toddlers program, free informational meetings and a lot more. The social worker essentially helped kind of tie up any loose ends to any questions that we had left. After all the evaluations were done. All of these things were pretty identical to the virtual evaluation, but with a few little key changes.

Lia: So the telehealth evaluation was pretty similar to the in-person evaluation, I will say they followed essentially the same principles as the in-clinic evaluation. But one of the main differences is that in the telehealth version, you are going to be the one performing all the tasks with your child, while the physician and medical team will essentially observe through the camera. So it can feel a little bit odd at first, but to me personally, the telehealth evaluation was way more comfortable. In telehealth, I was able to complete it in the comfort of my own house. So it was a lot easier for both me and my child. Because my child was already comfortable at home, she had absolutely no idea she was even being assessed because she didn’t have to go to a medical assessment facility. If your child is like mine and has a lot of medical phobias, or who gets really riled up as soon as they just walk into a medical facility or into a standard checkup, then this might be the route for you because again, as I mentioned, my kid had no clue she was being observed.

Lia: And similar to the in-clinic assessment, there can be one single evaluation or a multi-panel assessment with a team. If it’s with the team essentially each appointment will be scheduled separately, but typically close to each other or back to back. And again, that could be a one or two-day assessment. When we did our initial virtual assessment, it was two appointments per day spread out over two days. The second time we did our virtual assessment, though it was just to follow up with the decision and that was just one appointment on one day. So during these assessments, the primary difference is that again, I was directly involved in the tasks. So for example, the physician or the team would ask me to perform a task with my child, and they would just observe to see her reaction. An example I have is I was asked to place a baby doll for my kid and asked her to give the doll a bath. So she was presented with a washcloth, a toy bathtub and the doll. And I also even had a little rubber ducky there for her just for fun. And so while I was giving my child this toy, the team observed my child through the webcam on the computer to see what her reaction is to my request.

Lia: There’s also a lot of small play tasks involved like this throughout the whole session, they will typically give you an email in advance with a list of items that you should have in preparation for the appointment. So they’ll tell you- “Oh have a cause and effect toy”. So that can be like something that pops up or requires your child to do an action before it actually works. They might ask you to have something that involves imaginative play like a tea party set or the baby doll. They will help guide you every step of the way. But ultimately, it’s left up to you to actually play with your child for the evaluation.

Lia: Now also with the in-clinic assessment and the telehealth session, what they had in common was the fact that there is a heavy interview component. So you will still be asked about family medical history, complications during birth, etc. Even if you’re doing the virtual version, I would personally say if you’re the type of person who feels comfortable leading play with your child, the telehealth version is absolutely the way to go. I found it to be much more convenient than having to make the one to two-hour commute to the clinic. And also the best part is that you don’t have to wait in the waiting room with an anxious stressed-out child who gets absolutely riled up whenever they’re in a medical facility. I really enjoyed that. And I also really enjoyed how comfortable she was during the appointment, the less amount of stress I can put on my child the better. So for me personally, virtual is the way to go because she didn’t even have a clue she was being assessed. So personally, I found that I preferred the telehealth version way over the in-clinic version. But it’s all really personal preference. If you’re not comfortable doing hands-on stuff with your kid and you’re really more of an observer type, then the in-person might be better for you because the physicians and therapists will be in charge of that and you can kind of be a fly on the wall.

Lia: So again, to kind of summarize, the evaluations can be brief one to two-hour sessions with a pediatrician or psychologist or could end up being a multi-day event with a team but either way, just expect a very similar pattern of interview-style questions and observation of your child during play activities. Again, if you prefer a hands-off approach, I would recommend that you stick to the in-clinic evaluation. But if you feel comfortable leading play sessions with your child and feel confident to be more hands-on then telehealth is absolutely the way to go.

Lia: Ultimately, I think both of the methods are really equally effective and it’s really more of a personal preference. So just go with your gut and go with whatever makes you and your child most comfortable. There really is no wrong answer here.

Outro:
Lia: To recap, in this episode, we discussed how in-clinic and virtual evaluations are fairly similar with a mix of interview-style questions and observation of your child and both methods are equally valuable. The primary difference being that virtual evaluations require more hands-on approach. Thanks for listening to embracing autism. Tune in to our next episode where we discuss reacting to a diagnosis of autism. Why it’s okay to grieve and how a simple change in perspective can make a world of difference for you and your child.

Lia: See you next time on Embracing Autism.

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References
Definition of APGAR SCORE