Weathering the Storm
Show Notes for Embracing Autism Podcast — Ep. 104

Intro:
Lia: In this episode, we focus on why it’s okay and even natural to go through a season of grief after an autism diagnosis and how to overcome it with a simple change in perspective.

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. This is —

Lia & Matt: Embracing Autism!

Discussion
Lia: In our last episode, we discuss the details of diagnosis day. So I assume if you’re listening to this episode, your child probably received a diagnosis of Autism Spectrum Disorder. If you just received this diagnosis, you undoubtedly are probably struggling with an entire barrage of emotions. I know that I personally felt really overwhelmed and confused. Initially, after that diagnosis, a lot of times parents will be hit with questions and start thinking, ‘Did I do something wrong?’ or ‘How could this have happened?’ ‘Is my child going to be okay?’ Or even those who think a little long term and are thinking ‘what’s gonna happen to my kid after I’m gone?’ ‘Is somebody going to be able to take care of them?’ ‘Will they be able to take care of themselves?’ These are questions that are absolutely natural to ask. I personally remember having to ask these questions to myself initially and a lot of other questions like this suddenly rushed my mind. I couldn’t stop thinking and trying to figure out how did this happen? And what does it actually mean? I know that my daughter got her diagnosis at 20 months old. So there’s a lot of future that I was still not sure about at that time. And it’s definitely something that kind of took me off guard. I also had very little knowledge of autism, I really didn’t know anything about it. So my mind instantly naturally tended to drift towards absolute worst-case scenarios. I started panicking and just feeling a little bit helpless. For my kid, I didn’t really know what I could do or if there was something I needed to do. I simply didn’t know what it meant. Now, I just want you guys to know that if these feelings and emotions and lines of thought seem all too familiar to you, I want you to know that these feelings are absolutely normal, it’s okay to feel confused, frustrated, upset, it’s even okay to feel a little distraught. It’s absolutely natural. And essentially, every parent goes through this. I know when I first learned of my daughter’s diagnosis, I really did go through a grieving process of the future that I had imagined for her. And I felt like that future had suddenly vanished.

Matt: I completely agree Lia, for me, I guess my grieving process was more on the confusion side — ignorance is bliss. I didn’t really know anything about autism; so, therefore, I couldn’t really be worried about autism initially. But then looking back now, I think that I had two thoughts. In my mind, I was worried about fantasy or the future that I had projected onto my daughter and the experiences that I would share with her as her father. And then I wasn’t sure if that was suddenly brought into question where we might not have that future. And then the other thought that I had was any opportunities that I had projected for her success, whether it be her going to college or any academics and such, I wasn’t sure if that was suddenly brought into question as well.

Lia: I know that actually really stood out to me, the education part of it because we are a highly education-focused family. We’re kind of overachievers in that area, it’s kind of the area where we really thrive. And so we had already had plans for our kids to go to these private schools. And we had that all planned out, we were already looking at schools for them. I mean, we even went and physically toured locations. We were like, ‘oh, as soon as they hit kindergarten, we’ve got the school lined up.’ And we were really excited about it, we had already grown emotionally attached to these schools. So once we found out that our child was autistic, and later on that our second child was also autistic, that kind of dashed those dreams. And so we kind of felt a little bit of a loss there. Looking back, it is a little bit silly. But it’s really easy to get attached to ideas, and the family fantasy that you get, especially as new parents, because this was our first child. So we didn’t really know what to expect. And we still had that new parent rush. So we always were kind of like nesting but projected out into the future, where we’re trying to get everything situated and in place for them way in advance. And because we did that, we didn’t take into consideration any sort of wrench that could have been thrown in there. So this was essentially a wrench that was thrown in. But I don’t mean that in a negative light. I just mean it in the sense that it was unexpected. And we had to basically find a way to just redirect ourselves and come up with a new plan.

Matt: Yeah. As I mentioned, I had a delayed reaction as far as the diagnosis because I didn’t know anything about autism, I didn’t know what that meant. But with her developmental delays, if she was lagging behind in certain areas, or how that would equate to her moving forward in the future, I think it hit me later than I think it initially hit you, mostly because I was looking at her and how she was progressing. And I think it was the combination of the therapies mixed with her really struggling with getting speech, or her language developed, I think it was one of the speech therapy appointments, where they mentioned that she should know 200 words at that point, and she may be new 20. So it was just a drastic change of where her development should be and where she was actually at. I also think another thing that kind of hit home was just kind of her rigid behavior. She didn’t really acknowledge, I guess me as, like her actual Father. I guess I want to almost blame Facebook or social media a little bit on this one because I would have friends who are also at the same stage of life having children who are roughly the same age, and I would see them interacting with their child and the child at about the same age recognizing, ‘Oh, that’s my dad, my daddy’, and they would come running to them. And my oldest daughter didn’t have that reaction, when she saw me walk through the door, her first reaction wasn’t to come and run to me, it was — she didn’t even notice that the door was opening. And then I was walking in, there was no reaction of excitement, or just noticing that I was even there.

Lia: I can absolutely relate to that. Because one of the things that I also did, and I agree social media is the bane of my existence, is see other people who had children around the same age. So I had had that child, our first child, at the same time that about three or so of my friends had a baby the same exact time, all girls just like mine. And you can’t help but compare, because they’re all posting pictures and videos. And then I started realizing how delayed our child was at that point, I remember one of the moments that I had was seeing the picture of one of my friends’ kids, helping them bring groceries to the car. So she was probably close to two or so. And she had those plastic bags in each hand. I’m sure it was something really light in them. But she was just holding them and helping bring them to the car. And I thought that was super cute. And then I paused for a second. And then it was kind of cathartic thinking, you know, I don’t know that my child will be able to do that. I know that at that time, she definitely couldn’t. Right now, she still probably can’t. But at that time, it was kind of a realization of the reality is starting to hit home and started to sink in a little deeper. And that really made it a little more difficult to process. I think, had we not had Facebook, had we not had comparisons out there, I don’t think I would have noticed as much or even really had it, I guess influence me as much because it really hurt most when I saw potential. So I saw the potential of what she could have done or where she should have then. And though when I saw that she wasn’t meeting those milestones, that was kind of like a reality check hitting home. So I know that for me that the social media aspect was definitely not fun. I started looking at it from a slightly different perspective, because like I said, I come from a neurodiverse background. And I never viewed myself as having any sort of tragic end or anything like that I didn’t really see myself as incapable or less than. So I started kind of reflecting on my situation and how far I’ve been able to accommodate and essentially overcoming my life. And although I went through struggles, I overcame them. And I still made something out of myself. And obviously, I have a family and awesome kids. So that clearly never stopped that from happening. And so that gave me the energy to essentially start rethinking everything. And really, I like to just switch into thinking about the positive and what my child can do and what they’re capable of, instead of focusing on the things that she lacks or can’t do, or is not up to speed with her peers. I know that specifically for me, the one thing I did to really make that switch happen is I started judging her outcomes and achievements based off of herself. So instead of saying, Oh no, my kid is behind in whatever a typical person her age would be doing. I would go into her therapies and appointments saying, ‘Oh, look at this thing that she just did that she was delayed in two weeks ago and now she’s doing’. So for example, if she wasn’t able to say papa or mama or something like that, I didn’t see it as she’s behind her peers in this. I saw it more as the following week when she did — ‘oh my gosh, huge breakthrough, look at this. She’s constantly progressing. She’s constantly achieving.’ So I realized that it was more of a mental journey, kind of like a psychological-emotional journey that you need to go through to get over to the other side of that emotional slump. Pessimism really is what it is, it’s a pessimistic viewpoint to think that because my child has this diagnosis, it’s the end of their world or its worst-case scenario. I do understand that they are definitely degrees of disability. And the future outcome for each child can vary greatly from child to child. So there are some kids who have supposedly a brighter outlook than others. Really, I still think that’s all a matter of perspective. I know, for example, one of the things that I was thinking about with our child initially was, you know, this just means that we’ll get to spend more time with her if she needs our assistance. I’m all about having a mama’s girl. So I kind of see that as a positive that she’ll be around asking for mom’s help more often, I didn’t really see that as a negative, so I just kind of tried to give it a positive spin.

Matt: Well, let’s be honest here, our oldest is totally a daddy’s girl. So I’m not sure what you’re talking about there. So no, I think you raise a great point. And I kind of think of it almost as the therapist mindset and kind of having her compared to herself, and basically focus on her own achievements. So rather than saying, oh, Little Timmy is able to do all these fantastic things at his age, I don’t really care about Little Timmy, he’s not my kid. So I can just focus on my daughter. So in therapy, she was actually falling every time she would walk onto a mat or anytime she would have a transition from an unbalanced surface. And then as we kept working with her, she got a little bit better and a little bit better. She still, I mean falls down, but, but she’s definitely improving a great deal. And same thing with small things just as giving us a little bit more eye contact from time to time, or when we call her name, she acknowledges that we’re talking to her. And we’re not just saying random words. So I think that kind of ties into you ultimately have to celebrate the small victories in life. Focus on the small achievements that they’re overcoming, regardless of how small, celebrate them make a big deal. And your child will be excited too if you give them hugs and kisses or tickle them or make a big deal when they give eye contact, they’re hopefully more likely to do it in the future. I think another good approach to moving forward is not necessarily to think about the future opportunities as lost that we project for our children. But just think of them as slightly changed, she still has a bright future, no one’s taking her future away from her, it just might not be the one that we had initially planned for her. It’s just her own path or journey that she’ll walk.

Lia: The other thing that I started thinking about is, you know, realistically, our child was going to be autistic whether or not she got a diagnosis. It doesn’t make a difference that she has a label, she’s still going to be who she is. And she’s still going to like what she likes, and she’s still going to dislike what she dislikes. So having that diagnosis didn’t really change that. And it took a second to come to that conclusion in that realization that, you know, yes, she was diagnosed, but it doesn’t really change what her outcome would have truly been. Her outcome in life would have been probably about the same if not better now. Because with the diagnosis, we can now implement better support systems for her, we can have a better understanding of this. And that means that we can be emotionally supportive of her throughout her life as well. So I had that change of heart. And that change of perspective, when I realized, you know, she’s going to blaze a trail forward, and it’s just going to be a different trail than we thought, but it’s still going to be a trail. And a trail doesn’t have to be a billion yards long. It could be a couple of inches here or there. It’s still a trail and it’s her trail darnit. Just enjoy it and appreciate the fact that she has this thing that is unique and is her and enjoy every moment and just really embrace the fact that she is who she is and don’t try to change her. So I really had that change of perspective. And then when we had our second child diagnosed, it was completely different. I didn’t feel like I had to go through that entire grieving process that I went through the first time — my perspective had already changed. So the second one, it was kind of like, ‘yeah, okay, we got this’. And we already have made adjustments to our life. We’ve made adjustments to future plans, where we’re going to live, what school we’re going to go to, we’ve already readjusted all of that. And at first, it was hard letting it go. But the realization was that the hard part was just letting it go, it wasn’t actually doing it. So them going to another school or them being homeschooled, that’s not the hard part, the hard part was just coming to the conclusion that what I wanted wasn’t gonna happen. So it’s really all just honestly, all in our heads. It’s just a matter of really embracing that difference and embracing a new way of doing things, even though it might initially be uncomfortable. Or it might initially be just kind of something we want to begrudgingly do, I would just urge you to do it for the sake of your kid. With that said, I completely understand that a grieving process is part of this. It’s really absolutely natural like I said before, and it’s honestly necessary for some people. If you’re not the type of person who feels like they need to grieve, that’s great. But I know for me, I did need to go through a grieving process. And I don’t think there’s absolutely anything wrong with that. It’s just how we learn. I know that when I first learned about my daughter’s diagnosis, that process of having that future taken away from me, it really felt difficult to process. It was something that I thought I had experienced the loss, but it turned out, it wasn’t a loss, it was just again, like I mentioned a change of perspective. I ran into a lot of people that were actually mocking grieving, I know that there’s people out there saying, ‘you know, if you’re grieving, that means that you’re so focused on yourself, and you don’t care about your child, it’s really all about you.’ But I don’t think that’s the case at all, I think the grieving happens because you care for your child. So I think that if you go through a grieving process, it’s really a cathartic, really natural and even necessary process to go through in order to be the best parent that you can be for your child. I had run into a really interesting article from the University of Washington Counseling Center. And it had said that grieving loss is important because it allows you to free up energy that’s bound to the lost person, object or experience. And then they further said that we might reinvest the energy elsewhere if we’re able to go through that grieving process. But if that we don’t grieve effectively, we’re not going to be able to reinvest that energy. They basically say that that energy gets tied to the past. So if you don’t grieve effectively, you’re essentially holding on to that idea; you’re holding on to the emotions and the processing that’s going on in your mind, or you’re not giving yourself the proper outlet to really get that out of your system and just process it all in a healthy effective way. So go ahead and grieve, and just have that moment and give yourself some time, give yourself a break to process a however long or short, as long as it is grieving, and you know, not turning into a depression. If that’s the case, that’s an unhealthy process. And I would urge you to seek some counseling if you do feel that you fall into depression. But if it’s just grieving, that means that it’s a season of time that happens fresh after learning this. And then you learn from that you move on, you pull up your sleeves, and then you start doing the hard, but really rewarding work that it is to parent a child that’s on the autism spectrum.

Matt: I know for me that I found during this experience that the best way to kind of move forward was actually finding a social support group of some kind. I think, for me, it was taking a spiritual approach. And Lia actually brought this home to me and focusing on religion. Lia had mentioned early on during this journey that the soul of our daughter could have been put into any other child in any other family and they might have not had the same resources that we have, but by our daughter’s soul being put into her and having us as parents, it has given her the best opportunity to get the treatment that therapies, the love, and support that she needs to move forward. There are other social support groups that are available. Lia hosts a Parenting Autism Virtual Club that meets virtually once a month. And the link will be added to the notes of the podcast. There are other resources that are available through your local public school system.

Lia: Yeah, I actually do host a monthly online virtual parenting club. It’s on Facebook. And we will put the link to that in the podcast notes. We meet once a month on Google Hangouts or some other web conferencing format. And it’s just a bunch of parents video chatting with other parents and we talk about our struggles. We talk about our accomplishments, and we give each other advice and support and just hang out. There’s also other resources that you can seek out in your local community. I know that in my local community, I was able to dig up some parent groups that were available through the local public school system and I was also able to find other parents who would meet locally and I took advantage to have as many of those as possible. This completely varies from county to county, state to state. So it’s really town-specific. So just take a look at your local community, get involved in the school, ask maybe that social service worker, she may know of any or he may know of any resources that you have that are local to you. And if your county has something like a Parks and Recreation magazine, or something like that, I know that I found a ton of awesome resources in there for activities that are specifically for the special needs community. So I would definitely take a look at all of that and just try to get yourself involved in a social network so you can feel connected to other parents and not feel so isolated and alone in the process. Because I know that parenting a special needs child can be very isolating. And it’s important to make sure that you don’t fall into that.

Matt: My final tip is to educate yourself as best you can on autism. Anxiety is fueled by fear of the unknown. So if you can learn more about autism, there’s less unknown and therefore you’re better off for the future because knowledge is power. The best way to do this I would recommend is to try and seek out any autistic adults. This can be through Facebook or other social media and just talk to them just trying to get their perspective on how they see the world. And this will help you in the long run because then you’ll have a better idea of helping your child in the future.

Lia: Another great and easy way to get educated is to start picking up some books on autism, specifically books that are written from the autistic perspective, those are the most helpful, one of the most popular ones out there is The Reason I Jump (affiliate link)*. I believe the author is Naoki, I’m not exactly sure how to pronounce the last name, but that’s on Amazon and in any major book-selling store. And that book is told from the perspective of a 13-year-old boy who is autistic. So it’s a really good insight. Another book that I was looking into is the More than Words book (affiliate link)*. We’ll do a little bit more on that in future episodes. But that book is by Fern Sussman, and that book is talking about how to help your autistic child communicate, even if it’s just non-verbally. So if you have a child who struggles with communication, that’s a great book. I would just look into as many books as possible. The best ones are really again, the ones that are written from an autistic perspective, or from researchers who have worked with autistic individuals who have kind of given them the green light as well, there are some of those there as well.

Outro:
Lia: To recap, in this episode, we talked about the importance of allowing yourself to grieve in order to refocus your energy in a healthy way. We also discussed how social support systems such as our parenting autism virtual club can be a great resource. Most importantly, we noted how changing your perspective on autism is critical to your family’s mental health. Thanks for listening to Embracing Autism. Tune in to our next episode where we will offer insights into how to find financial resources and support for your child. We will answer questions such as — ‘Is there government assistance available for autism?’ And ‘Are there resources which offer free support?’ — This is Embracing Autism.

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Resources:
Healthy grieving
Virtual Autism Parent Support Group
More Than Words: A Parents Guide to Building Interaction and Lanuage Skills for Children with Autism Spectrum Disorder (paid link)*
The Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy with Autism by Naoki (paid link)*

*As an Amazon Associate AutismWish will earn from qualifying purchases.

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