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What exactly is Autism Spectrum Disorder? Is my child showing red flags? Should I be concerned? Demystify Autism and learn about some common red flags, as we pull directly from our personal experience while tapping lightly into the science.
Demystifying Autism
Show Notes for the Embracing Autism Podcast — Ep 101
Introduction
Lia: In this episode, we’ll go into a deeper dive about what Autism Spectrum Disorder (ASD) means as well as what are some potential red flags you may be seeing in your child.
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. I’m Lia!
Matt: And I’m Matt!
Lia: This week we’ll 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: I often hear a lot of people kind of asking what exactly is Autism Spectrum Disorder. I know that I personally didn’t really know much about it when I was first told that our child had Autism Spectrum Disorder. You kind of get a little bit of the cliches from television shows and movies. One of the things that I started looking into was what exactly is Autism Spectrum Disorder. And there seems to be a little bit of a debate because not a lot is known about Autism Spectrum Disorder. So there’s research that’s being done out there; one of the ones that we got involved in was the Spark Clinic. So they’re doing a lot of genetic testing, but there isn’t even a consensus on to really whether Autism Spectrum Disorder is considered a mental illness or is just a developmental disorder. So I looked into it from both perspectives and the Mayo Clinic, for example, specifically says that Autism Spectrum Disorder is a condition that’s related to brain development and it specifically is defined by impacting how a person perceives or socializes with other people. So it causes social interaction issues specifically, and then it has issues that are related to communication. So that’s a broad generic definition, but we also saw that the cdc.gov kind of elaborated on that. And we’ll say that essentially people with Autism Spectrum Disorder do communicate, they just communicate, interact, behave, and learn in different ways. So they don’t necessarily communicate in the way that typical people would. And sometimes it’s perceived as non-communication, but there is communication there in the form of body language or other unique ways that we just need to learn to perceive a little better. It’s kind of just boiling down to a neurological condition.
Matt: I’ll just reflect on that. It seems like because things are so new with Autism, we found out that they didn’t even know that females could be Autistic until relatively recently — that they would be diagnosed much later in life than your typical male.
Lia: One of the other things that I noticed when we were going through this process — because both of our children are female and we actually are an unusual statistic in that our children got diagnosed extremely young — and the statistics had said something like the average girl who got diagnosed tends to get diagnosed at either 10 years old or older, but usually more in the teenage years. And then for boys, the average boys were getting diagnosed around seven or eight years old, like half the amount of time it took for the girls to get diagnosed.
Matt: Right. And that’s why I think you mentioned as far as the genetic testing that we’re going through with our institution, one of the pamphlets that we had seen when we had first gotten the diagnosis was that there was very limited research into the families of the autistic community. And that’s why they took an interest that we had two daughters that were very close in age and they wanted to closely monitor for research purposes so they could better learn a little bit more about autism disorder.
Lia: While we’re talking about what Autism Spectrum Disorder is, we also need to talk about what Autism Spectrum Disorder is not. So there’s a lot of common misconceptions out there, and I cannot tell you how many causes I have seen, but the number one cause that people say is associated with Autism Spectrum Disorder is always vaccinations. There’s always the debate of vaccines caused your Autism. But the thing is, there’s been a ton of research that’s out there that has debunked that. So there is no relationship between vaccinations and Autism Spectrum Disorder. So there really is no point in trying to shame parents who have vaccinated their kids.
Matt: Or you get the person who informs you that, ‘oh, your child will just grow out of this phase. This is a temporary thing. Every kid has trouble with transitions or has trouble speaking, right?’ That ‘this is not a big deal. There’s no trouble here and they’ll grow out of it in a few months, a year at most’. Though we have learned that you don’t grow out of Autism — you have Autism.
Lia: You are Autistic and no matter how much growing or learning you do, you don’t suddenly have Autism disappear from your life. Right? So I am not afraid to share — I personally have my own disability. I have ADHD and a couple of other things. And I don’t see why Autism has to be perceived in any different way than the way we perceive other learning disabilities and ADHD, where it’s just accepted as that’s who you are. Right? So I don’t say I have ADHD. And then it’s like — sometimes I do and sometimes I don’t have ADHD. Sometimes it creeps up on me and sometimes it’s just gone. Once you have ADHD, you have ADHD 24/7. It’s just a part of who you are. And all you really do is kind of learn to accommodate your life and have other people help you accommodate your lifestyle to make it functional.
Matt: And it seems like there is a slight negative taboo with the label of Autism. And for us, I realized that once you get through the initial shock of, ‘oh, okay, well, my child is autistic’ — there’s such great development that we’ve noticed just in the last year with our oldest; we’re seeing great improvement in a number of areas. And it doesn’t seem to me that it is the taboo that society has made it out to be. It’s not a boogeyman, and it shouldn’t be the defining characteristic of your child, of who they are. My child loves Blue’s Clues —
Lia: That would be considered definitely a special interest, which I guess we should mention that special interests are part of autism as well. There’s a lot of autistic individuals who will have a unique fixation or something that they really love. And a lot of autistic adults that I have talked to, say there’s a distinct difference between a special interest item and a hobby. People are like ‘oh, they just have a hobby that they really like’. But from what I’ve heard from autistic individuals, they’re like — ‘no, it’s not just a hobby. It’s something that we intensely passionately feel about. And it’s like a part of us and a part of who we are’. That’s slightly different than what you would consider just a hobby. So I’ve always found it really important that if our kid has a special interest — like one of her special interests is rubber ducks, she is obsessed with rubber ducks. So we just encourage it and just like whenver she is feeling down, or she’s getting frustrated, we just get all her rubber ducks that she’s got — like at least 10, 11 or 12 of them — and put them all in a bucket, and give it to her. And she’s one happy, lucky, little girl. Why take that away you know? Even if it’s strange, like a lot of people think it’s strange because autistic individuals will bring their special interest into adulthood. I’ve actually seen this — autistic adults saying ‘I’m embarrassed because people are making fun of me because I bring my Teddy bear with me’, or ‘I like to sleep with a Teddy bear’. And I’m like, who cares what people think? Take that Teddy bear and sleep with it. I personally still love my stuffed animals and I’m in my thirties. So I’m just like, you do you and just let the world figure themselves out and not worry about them and just you do you.
Matt: Well, we also talked a little bit in the last episode about picking your battles. And so for instance, our daughter loves her rubber ducks. And sometimes if we’re doing a transition where we need to go in the car to run an errand, sometimes she will want to bring her rubber ducks and we have a little bucket and we’re like, ‘okay, put the ducks in the bucket and let’s go’. And I guess my thought is, even if she takes that into adulthood, that isn’t a serious concern because my attitude is when I’m in the office, I have Walking Dead zombie figurines on my desk. So, what’s the difference if she has rubber ducks or little different ducks on her desk? Like, it’s something that you’re interested in. That’s just something that makes them happy. No one has treated me differently because I have my little Walking Dead zombies on my desk. It’s just an interest of mine.
Lia: Sometimes people feel ashamed or embarrassed because their child stands out from all the other children. And a lot of times there’s a feeling of ‘my kid’s going to get bullied or my kid’s going to get harassed because they’re doing this weird thing and everyone’s going to be watching. And those kids are going to make fun of him.’ But I just think that’s a completely backward way of approaching it. It makes more sense to be like, ‘oh, look at what my kid just discovered!’
Matt: The thing that we’ve seen is the splinter skill, kind of specialized skill that they are off the charts impressive with.
Lia: Not all autistic kids have that. So there are autistic kids who have the lower IQ issues. And so I do like to consider that as well, because I know it’s not the same situation for everyone, but I do think that in terms of what is Autism Spectrum Disorder, all you really need to know is that it’s a neurological condition. It’s something that typically the research indicates you’re kind of born with. It seems to be mostly genetic. And it also seems to be very different from person to person. So not every autistic person presents the same way. Some people can be really hypersensitive to sound. Other people might flourish under certain sounds. Some people might really have to be very organized and line their things up properly and it might bring them joy. Other people find organization in chaos. So it’s just very different. I know with our kids, for example, one of our kids is super motion seeking. This kid loves to spin and jump and bounce and run. And the other kid is kind of more laid back and more chill. She likes to just sit in her area, organize her toys, line them up in a row.
Matt: And she likes her flashcards.
Lia: Yeah. She likes to have a more structured sort of setting. Whereas our other kid is more rambunctious, but they’re both autistic. They’re just very different kinds of autistic. So I think that’s the other problem is that a lot of times there’s this misconception of autism. It’s this label that I slap on you and it means you need to be treated accordingly to X, Y, and Z plan or I need to make exactly these accommodations for you. And the thing is the accommodations are never universal. You need to custom tailor everything to each individual child. How I approach my child might not be the same way you approach your child just based on their varying degrees of needs and wants.
Matt: One of our daughters isn’t a fan or wasn’t a fan until recently of having water on her. She had a huge water phobia. We had to slowly transition her. Our other, older daughter, she loves water. She loves being in water and we leave her in the bath, just playing with her toys after a bath because she’s just having so much fun. Same thing with the lights. Autistic kids are much more sensitive or perceive light in a different way. And then also, as far as the concept of taste, you might have a picky eater on your hands.
Lia: The light concept itself — so a lot of times there are autistic individuals who are hypersensitive to light. These might be individuals who might prefer to wear sunglasses, or they might prefer to just be in shady areas. And then there are kids, like our kid, who are obsessed with lights. If you give her LEDs, she will sit there and shine them directly on her eyes as long as she can unless you take it away. So it really is like a drastically varied spectrum. And that is why it’s called Autism Spectrum Disorder now and not just Autism because no two autistic people are the same. And to that effect, it really does matter how you treat each individual autistic person because you have to accommodate accordingly. Our two children are completely different cases.
Matt: And that’s why I think we made the naive mistake at first because we were using our oldest daughter as the anchor point of,’ okay, this is what autism is’. And then when we had our youngest, we were like, ‘oh no, she can’t be autistic because she’s nothing like her sister’. And then we had the wake-up call of, ‘okay, she can still be autistic. She’s just on a spectrum’
Lia: Yeah. And then on top of that, the other issue we ran into is once we did find out she was autistic, then we’re like, ‘Okay, we’ve done this before. We can tackle this’. And so we essentially started tackling it and by tackling, I mean, helping her with her language and things like that because she’s non-verbal. We basically started to approach it the same way we did with our first kid trying to expose her to language. But then we realized that was not working at all with our second kid. We basically had to do a completely brand new system for her. And honestly, it’s something we’re still working on with her because she’s still pretty much non-verbal. Whereas with our first kid, everything that we did actually worked and she was able to expand and progress with her language fairly quickly. So it really is a matter of just make sure you have the time and patience for each child if you have more than one autistic child. Make sure that you just custom tailor everything to that child and let your child lead the experience. If they are not enjoying the way you’re teaching them something, then try something new, let them guide you. And don’t ever force your child to do something that they don’t want to do because that’s not going to be conducive to learning. And honestly, you gotta be careful about what you want your child to learn. You want your child to learn to embrace their autism. You don’t want them to learn that autism is this bad, boogeyman thing that they have to basically get rid of. So it’s more about accommodating it rather than trying to change it or remove it.
Matt: Great point that each kid is different. So don’t go in with the same mindset of, ‘this worked for this one. And let me try the exact same thing’. Each kid is a little different. You’re going to need to learn what their strengths are, what their weaknesses are, and then focus on the weaknesses. And hopefully, from there you’ll be able to see some improvement.
Lia: Let’s talk about some red flags that we saw because I know that with each kid, we basically saw two completely different sets of red flags with our first kid. We, we really saw some, honestly the day she was born, but we didn’t realize that they were red flags because she was our first child.
Matt: So I think the first thing was when she was a brand new baby, she never really cried. She would never show that she was hungry or needed a diaper change. We just thought she was the greatest baby in the world. We were like, ‘wow, everyone complains that their baby is crying and ours is as quiet’.
Lia: She would sleep for five hours in a row throughout the day. Remember that? And we would be like, ‘oh, she’s such a good baby.’
Matt: And then even at night, when she was hungry, she wouldn’t cry and wake us up.
Lia: The only way I knew that she was hungry was because she would start viciously sucking her thumbs and her fingers — she never cried. And in retrospect, that’s like a huge red flag. She wasn’t able to communicate her needs and wants in that way. And later, as she got older, that was one of her things when she was hungry or thirsty, she was never able to express to us or even show us that she was okay.
Matt: We actually had worked with infants and toddlers just to get her to the point where she is requesting her needs to us. So if she is hungry, we’re teaching her some type of sign language to show us, ‘oh, I need a snack. I’m hungry.’ Just something.
Lia: We really had the most trouble with her. Because initially when she was really young, she was completely in her own little world. Like she was staring off into space a lot, not responding to her name, avoiding eye contact proactively. She would be very content just being in a corner and isolating. She seemed completely unaware of her surroundings. Like she didn’t really realize if there were people around.
Matt: She didn’t even care.
Lia: Right? She didn’t even care. If you tried to go out of your way to get her attention, she still wouldn’t respond or react. You really had to be like right in her face for her to even realize you were there. So that was one of the biggest red flags that we noticed that something was off.
Matt: Right. And I think the one saving grace moment with her was that she was obsessed with songs and music and nursery rhymes. So we were able to engage with her or get her attention through music. And we were able to slowly kind of work our way to getting her to notice we were there.
Lia: Right. With the other red flags, the things that we noticed were the hand flapping. It took us a while to even realize that she was doing it because there’s a period, a stage that babies go through where arm flapping is actually very normal. It’s very typical and part of their development. So she was always kind of doing it. And I was like, ‘oh, she’s just a happy baby’. But because she was our first child, I didn’t realize that there’s a cutoff point in age where a child is supposed to essentially stop that behavior.
Matt: Yeah, I had no knowledge one way or the other.
Lia: I remember when we did the evaluation, that was on there. And then the thing that really stood out to me too was the fact that she started lining everything up.
Matt: Right. Very OCD, everything in a line regardless. I mean, she wouldn’t play with a toy, but she would line the toy up with another toy.
Lia: Yeah. And it didn’t even matter what the toys were. She lined up water bottles, she lined up ducks. She lined up pretty much everything that she saw, even random things like crayons or whatever. She was just always lining everything up.
Matt: I think of like the truck and a typical kid would push the truck around, making the wheels spin on the ground like a normal truck would move, but with her, it would just be lining the truck up, moving it into a new location, lining it up with the other trucks or cars that she had to play with. So that behavior definitely stood out as something that seemed a little different that I wasn’t used to, or hadn’t encountered before.
Lia: Yeah, and then there were a few other things. She had low muscle tone and she never crawled. So that was something that was a red flag for us too, because when she would try to crawl, she would get kind of in a crawling position but then her legs would kind of just frog-leg out. So they were like spread out and she wasn’t able to get the strength to push her knees up under her and prop herself up into a crawl position. And I remember putting her into that position physically for her and then as soon as I would let go, she would just flop back down. So that was something very unusual to me. And I was a bit concerned. Because that seems like a medical issue to me.
Matt: Right, it seemed like a definitely very delayed and developmental concern. Transportation was basically doing a barrel roll, just rolling, and then trying to reposition and then roll to wherever she was going. And then I think we first noticed that she was starting to walk at around 13 months, but before that it was basically rolling and us carrying her, picking her up. But there wasn’t any other type of movement.
Lia: These were basically a couple of red flags that we saw. Honestly though, there’s a lot of red flags. We could probably go on days and days talking about how many red flags we saw.
Matt: Well, these are all the early signs. I would say these are all probably one year and younger.
Lia: We basically noticed pretty much completely different red flags with our second child. Our second child was more of an active baby. Her red flags were primarily things like spinning, running, jumping, constantly crashing, constantly seeking sensory feedback. She would bring blankets to us, for us to wrap her up in a blanket. She’s non-verbal so she basically just brought us a blanket and I knew what that meant. She also had a lot more of the feeding issues. So our first child had feeding issues as well. She had sensory aversions to certain foods and textures, and it was really limited on her diet. And then our second child has been so limited that she’s actually been restricted, mostly to purees and baby foods, even though she’s going on 20 months old now that’s basically been her primary die. I think with the second child as well, we had issues with severe water aversion. Like she hated water.
Matt: The first one was spitting the water and now this one or second child wouldn’t necessarily have anything to do with it.
Lia: I was working with occupational therapy and it literally took me a month, a full solid month to get her comfortable with taking baths. I had to slowly transition her into the process and now we’re able to get her to take a bath, but it was just such a problem initially with her.
Matt: As an adult or a parent, being able to focus and put yourself in their shoes and see, ‘okay, this is a sensory experience that they’re having’ and from that trying to gauge, ‘okay, so they don’t like when water splashes on them when they accidentally spilled a water bottle on them, and they don’t like how that feels’. And then being able to understand that they might not be a fan of taking a bath just because of the same sensation and experience as well.
Lia: I think also the things that we started to notice were the tiptoeing behaviors with both of the kids. So both of the kids had tiptoeing behaviors. You know, initially tiptoeing is not a big deal. It can become an issue later on because it can cause the tendons to shrink. So some people even require surgical intervention. When we notice that they were constantly tip-toeing that was a huge concern, which honestly I did not know that was a symptom of autism. Initially, I had to basically mention it during one of the therapy sessions and they’re like, ‘yeah, that’s associated with Autism Spectrum Disorder as well’. That’s something that both of them have done and we’ve worked with them. They still honestly do it on occasion, but it was pretty obvious in that first kid. Like she did it all the time, 24/7, and we really had to work with her. With our second kid, it wasn’t as prevalent. It was a little more discrete and because of that, we weren’t quite sure with her either.
Matt: I think another area that we’ve noticed that there have been some red flags with both of our girls would be the meltdowns that they’ve experienced and difficulty transitioning. I’ve noticed that it’s more so with our oldest daughter for the transition period, that whenever she’s either playing or watching TV and we try and change activities, she has a hard time transitioning.
Lia: She’s had a difficult time transitioning from one activity to another activity. For example, taking her on a car ride. If she was playing with her toys in the house and then we have to go to get groceries or something like that and it’s time to pack up and go in the car, she would have a huge meltdown where she would just throw herself on the floor and cry in hysterics. And we would have a hard time getting her to kind of calm down just to be able to bring her to the grocery store.
Matt: And sometimes we have to avoid some of these places in general.
Lia: She just gets sensory overload and she can’t handle the noise, the music, the talking, the movement, the flashing lights, and colors. So sometimes those things would trigger meltdowns. So that was something that we noticed that was happening. But we at the time didn’t know it was due to sensory overload.
Matt: And it’s not just that she will refuse to walk to make you carry her because she’ll fight because she wants to be on the ground. And then she’ll insist on sitting on the ground or lying down on the ground and basically dead weight if you try and move her.
Lia: And a lot of people get tantrums versus meltdowns confused. So I’ve heard people say, ‘you just need to learn how to discipline your child’ or ‘oh, that kid is spoiled’. And that’s another common misconception with autism. When a kid is having a meltdown, it’s not the same thing as a tantrum. And there are ways that you can differentiate between the two. I kind of knew it was getting a little bit extreme when it would just happen out of seemingly nowhere because there didn’t seem to be any specific triggers.
Matt: And it seemed like it was for relatively minor things as well.
Lia: Yeah. Like if her ducks weren’t all in a row.
Matt: Or if her sister was stealing her ducks.
Lia: Right. Oh my gosh, don’t even!
Matt: But it seemed like it was for what I would consider relatively minor things. It would be a huge life-altering meltdown.
Lia: So if you notice that your child is having what appears to be a massive tantrum, pay attention to what’s triggering that tantrum. Just pay attention to see what’s going on to see if it is in fact a tantrum, or if you might be seeing a red flag for autism. If it’s being triggered by something that might be sensory-related; if they are having difficulty with too many loud noises there; if there are too many people over there; their routine has changed and you change the decor in their bedroom, it might just be that your kid is actually having an autism meltdown and it’s not actually a tantrum. So that was one of the things that we had to learn to distinguish.
Matt: Right, I think we had family members come over. It was still a relatively small gathering, but, I think it was just new people in the house that she wasn’t accustomed to. And just the change in environment, people talking, being a little louder than just the two of us.
Lia: She was totally overwhelmed with all the relatives coming over. The noise of the wrapping paper being ripped up and just the movement, the shuffling, everyone laughing and talking. It was just overwhelming for her.
Matt: It wasn’t over the top; ‘cause even you describing it, as far as having family come over, there were only two additional people who had joined in that Christmas.
Lia: To a normal person who is just thinking that they have a typical child it would seem like your child is just overreacting. You’re like, ‘why is she freaking out when we only have two people coming over? We’re just opening presents’. But in retrospect, now that we have all this experience with autism, we realized that it was that change in her routine and sensory overload, all the ripping of the wrapping paper and all the noises from just conversing. Cause there wasn’t even any Christmas music playing, but we also had all the Christmas lights going and we had all the decor. So it’s just complete sensory overload.
Matt: I think if we’re looking at individual things. It was very small changes. But I think for her, each of those small changes snowballed and made a huge difference that turned her world upside down.
Lia: Yeah, exactly. Once we started realizing that, we started recognizing more red flags and that led us to more stereotypical autism red flags that we started noticing. Other things that we really noticed with her were more like the echolalia. Echolalia is a common symptom of Autism Spectrum Disorder and it basically means that a kid will repeat what you’re saying, kind of like a parrot. So if you say, ‘okay, put your shoes on’, then your kid will repeat back to you ‘okay, put your shoes on’. Or they might just say, ‘put your shoes on, put your shoes on’ or something like that. That was something that we started to notice our oldest one doing, particularly when she was upset or frustrated.
Matt: I think for me it was the biggest thing because trying to comfort her when she was crying, I would reassure her. ‘Oh, it’s okay, you’re okay, you’re okay’. And kind of rub her back a little bit and then she would be repeating back to me. ‘It’s okay, you’re okay, you’re okay’. And then now if she’s upset, crying and I’m holding her, I don’t even have to say ‘you’re okay’. She’ll repeat back to me. ‘I know, I know, you’re okay’.
Lia: Yeah. Like she’s learned to associate the phrase ‘it’s okay, I know’ to when she’s upset. So she doesn’t really know what it means. She doesn’t understand that we’re trying to comfort her. She’s just in a sense, been conditioned unintentionally to associate the phrase, ‘It’s okay, I know, I know’, when she is feeling sad, upset, or frustrated. So echolalia is repetition, but there’s also something called scripting that our kid also did. Scripting is essentially when they memorize lines or scenes from movies or books or stories and they can repeat them verbatim. And that was a huge one with her.
Matt: The struggle with us at first was because she was struggling with language in general. Through the scripting, that kind of allowed her to pick up some words that she wouldn’t have ordinarily had.
Lia: Initially. One of the biggest things that you’ll see is a speech-language delay in Autism Spectrum Disorder. So usually kiddos will be flagged because they’re not where they should be with language. They don’t have the number of words they should have. So she was supposed to have 20 words by 18 months and then like 200 that you understand. But she definitely did not have the 20 words. Even the words that she had were just things that described things, but she would only use words to really just say things out loud. So she was never trying to communicate with those words. She wasn’t trying to tell me that the duck was yellow. She wasn’t trying to get my attention on the yellow duck. She just saw the duck, thought it was an interesting duck, and wanted to point out, ‘oh, look yellow’ like a yellow duck.
Matt: And it was the same thing with scripting. When she was a little older, she was able to repeat phrases that she had heard, but she wasn’t able to use them in any meaningful way. It was just repeating a random segment of words that she had heard from somewhere
Lia: And eventually, with time, I’d say like a year later she was able to use the things that she had memorized from scripting in context. So she will still script and say those lines from movies, but she will use them in a scenario that will actually make sense. One of her favorite movies is Blue’s Big Musical. And there’s a part where the little cartoon soap bar slips and falls. And he goes, ‘whoooOOOoooa!’ when he slips. So now every time she falls or she gets injured instead of reacting with a natural response, her reaction is to say, ‘whoooOOOoooa’, just like slippery soap. So she’s now learned to associate with what it actually is similar to, but she’s not able to come up with her own original reaction.
Matt: Right. That kind of goes along with having to be taught how to communicate. And I mean that going down to the play as well.
Lia: She’s actually gone through a lot of therapies because of that, but that was honestly one of the biggest red flags that we noticed. With fine motor, one of the issues that she had was she wasn’t able to, for example, put coins inside of a piggyback. So they had tested that during her evaluation and they noticed she didn’t have a fine pincer grasp. So there’s a lot of little things like that that we never would have noticed if it wasn’t for the evaluation.
Matt: That’s true. I would say she’s very rigid with any type of change of routine. So trying to institute any type of regular routine that isn’t what she’s used to or accustomed to is a struggle in itself.
Lia: For example, what I used to do is I would go to work and I’d drop her off at my mom’s, who would watch her while I was working. So that was the routine. Right? But then my schedule got changed up when I got pregnant with my second child. So I was able to work from home more often. And then the days that my mom would be watching her kind of would change. So she would get frustrated if I unexpectedly dropped her off at my mom’s. She would be crying and fussing because she’s not used to that. She was used to being home on those days. And alternatively, if I had her home on a day she wanted to go to grandma’s, she would be fussing and having another meltdown because she thought, ‘no, this is the day we go to grandma’s’. So that rigidity with the schedule itself was something that I thought was a little bit strange, but at the same time, I didn’t really think it was an autism thing.
Matt: Well we still see that today. She will want to go in the car if we don’t go for a car ride in the afternoon because we don’t feel like it, or life has changed and there’s another task we have to complete. She’ll be asking to go in the car and it’s kind of a little bit of a struggle letting her know, ‘not today’. It breaks up her routine a little bit.
Lia: Yeah. I think the very last red flag that we noticed, and this was more on our second child, we didn’t really notice it so much in our first child, but it was really that headbanging. We noticed online that a lot of families were seeing headbanging and I had never experienced that with my first child. So I totally didn’t even have that on my radar. But when our second child was born and she got a little bit older, she suddenly started headbanging. And that’s when I went from thinking, okay, I definitely don’t think she’s neuro-typical at that point, I was still kind of on the fence because she was doing like the — crashing, the running, the spinning. But you know, I was like, well maybe she’s just a more hyperactive kid with a speech delay. But then when I started seeing her doing the headbanging, I was like, there’s not really anything else that could explain that at that point.
Matt: Right, It seemed like the headbanging, she was finding it enjoyable because it was very similar to her running and climbing around.
Lia: Like a stim, like what the autistic community calls, when you essentially try to do things to self-regulate, they call it stimming. What we notice is she was only doing it when she was going to bedtime in the crib. So we basically were like, well, it might just be that because she loves to run span and crash and dive when she’s outside of the crib. When she’s in the crib, she’s very limited and she can’t do that. So she’s trying to find another way to get that sensation and get that body space awareness within the confines of her crib. So those were basically the major Red flags that we saw. There honestly were a lot more, but that’s, I would say the biggest ones.
Outro
Lia: to recap in this episode, we’ve touched on how autism is a spectrum and presents very differently in each child. Remember we’re not doctors, so always bring red flag concerns up to your child’s pediatrician or neuropsychologist.
Thanks for listening to embracing autism tune into our next episode, where we will dive into how to prepare for a diagnosis and answer questions such as how do I get my child evaluated? What can I do while waiting for the appointment and how can I best prepare for diagnosis day? See you next time on embracing autism.
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References
Basics About Autism Spectrum Disorder (ASD) | NCBDDD | CDC
Autism spectrum disorder – Symptoms and causes
Autism Special Interests
Age at autism diagnosis differs between boys, girls
Autism and Vaccines – Vaccines do not cause Autism
The SAGE Encyclopedia of Intellectual and Developmental Disorders
Toe Walking and ASD
Why Does My Child With Autism Echo Words and Sounds?
Scripting
Show Notes for the Embracing Autism Podcast — Ep 101
Introduction
Lia: In this episode, we’ll go into a deeper dive about what Autism Spectrum Disorder (ASD) means as well as what are some potential red flags you may be seeing in your child.
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. I’m Lia!
Matt: And I’m Matt!
Lia: This week we’ll 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: I often hear a lot of people kind of asking what exactly is Autism Spectrum Disorder. I know that I personally didn’t really know much about it when I was first told that our child had Autism Spectrum Disorder. You kind of get a little bit of the cliches from television shows and movies. One of the things that I started looking into was what exactly is Autism Spectrum Disorder. And there seems to be a little bit of a debate because not a lot is known about Autism Spectrum Disorder. So there’s research that’s being done out there; one of the ones that we got involved in was the Spark Clinic. So they’re doing a lot of genetic testing, but there isn’t even a consensus on to really whether Autism Spectrum Disorder is considered a mental illness or is just a developmental disorder. So I looked into it from both perspectives and the Mayo Clinic, for example, specifically says that Autism Spectrum Disorder is a condition that’s related to brain development and it specifically is defined by impacting how a person perceives or socializes with other people. So it causes social interaction issues specifically, and then it has issues that are related to communication. So that’s a broad generic definition, but we also saw that the cdc.gov kind of elaborated on that. And we’ll say that essentially people with Autism Spectrum Disorder do communicate, they just communicate, interact, behave, and learn in different ways. So they don’t necessarily communicate in the way that typical people would. And sometimes it’s perceived as non-communication, but there is communication there in the form of body language or other unique ways that we just need to learn to perceive a little better. It’s kind of just boiling down to a neurological condition.
Matt: I’ll just reflect on that. It seems like because things are so new with Autism, we found out that they didn’t even know that females could be Autistic until relatively recently — that they would be diagnosed much later in life than your typical male.
Lia: One of the other things that I noticed when we were going through this process — because both of our children are female and we actually are an unusual statistic in that our children got diagnosed extremely young — and the statistics had said something like the average girl who got diagnosed tends to get diagnosed at either 10 years old or older, but usually more in the teenage years. And then for boys, the average boys were getting diagnosed around seven or eight years old, like half the amount of time it took for the girls to get diagnosed.
Matt: Right. And that’s why I think you mentioned as far as the genetic testing that we’re going through with our institution, one of the pamphlets that we had seen when we had first gotten the diagnosis was that there was very limited research into the families of the autistic community. And that’s why they took an interest that we had two daughters that were very close in age and they wanted to closely monitor for research purposes so they could better learn a little bit more about autism disorder.
Lia: While we’re talking about what Autism Spectrum Disorder is, we also need to talk about what Autism Spectrum Disorder is not. So there’s a lot of common misconceptions out there, and I cannot tell you how many causes I have seen, but the number one cause that people say is associated with Autism Spectrum Disorder is always vaccinations. There’s always the debate of vaccines caused your Autism. But the thing is, there’s been a ton of research that’s out there that has debunked that. So there is no relationship between vaccinations and Autism Spectrum Disorder. So there really is no point in trying to shame parents who have vaccinated their kids.
Matt: Or you get the person who informs you that, ‘oh, your child will just grow out of this phase. This is a temporary thing. Every kid has trouble with transitions or has trouble speaking, right?’ That ‘this is not a big deal. There’s no trouble here and they’ll grow out of it in a few months, a year at most’. Though we have learned that you don’t grow out of Autism — you have Autism.
Lia: You are Autistic and no matter how much growing or learning you do, you don’t suddenly have Autism disappear from your life. Right? So I am not afraid to share — I personally have my own disability. I have ADHD and a couple of other things. And I don’t see why Autism has to be perceived in any different way than the way we perceive other learning disabilities and ADHD, where it’s just accepted as that’s who you are. Right? So I don’t say I have ADHD. And then it’s like — sometimes I do and sometimes I don’t have ADHD. Sometimes it creeps up on me and sometimes it’s just gone. Once you have ADHD, you have ADHD 24/7. It’s just a part of who you are. And all you really do is kind of learn to accommodate your life and have other people help you accommodate your lifestyle to make it functional.
Matt: And it seems like there is a slight negative taboo with the label of Autism. And for us, I realized that once you get through the initial shock of, ‘oh, okay, well, my child is autistic’ — there’s such great development that we’ve noticed just in the last year with our oldest; we’re seeing great improvement in a number of areas. And it doesn’t seem to me that it is the taboo that society has made it out to be. It’s not a boogeyman, and it shouldn’t be the defining characteristic of your child, of who they are. My child loves Blue’s Clues —
Lia: That would be considered definitely a special interest, which I guess we should mention that special interests are part of autism as well. There’s a lot of autistic individuals who will have a unique fixation or something that they really love. And a lot of autistic adults that I have talked to, say there’s a distinct difference between a special interest item and a hobby. People are like ‘oh, they just have a hobby that they really like’. But from what I’ve heard from autistic individuals, they’re like — ‘no, it’s not just a hobby. It’s something that we intensely passionately feel about. And it’s like a part of us and a part of who we are’. That’s slightly different than what you would consider just a hobby. So I’ve always found it really important that if our kid has a special interest — like one of her special interests is rubber ducks, she is obsessed with rubber ducks. So we just encourage it and just like whenver she is feeling down, or she’s getting frustrated, we just get all her rubber ducks that she’s got — like at least 10, 11 or 12 of them — and put them all in a bucket, and give it to her. And she’s one happy, lucky, little girl. Why take that away you know? Even if it’s strange, like a lot of people think it’s strange because autistic individuals will bring their special interest into adulthood. I’ve actually seen this — autistic adults saying ‘I’m embarrassed because people are making fun of me because I bring my Teddy bear with me’, or ‘I like to sleep with a Teddy bear’. And I’m like, who cares what people think? Take that Teddy bear and sleep with it. I personally still love my stuffed animals and I’m in my thirties. So I’m just like, you do you and just let the world figure themselves out and not worry about them and just you do you.
Matt: Well, we also talked a little bit in the last episode about picking your battles. And so for instance, our daughter loves her rubber ducks. And sometimes if we’re doing a transition where we need to go in the car to run an errand, sometimes she will want to bring her rubber ducks and we have a little bucket and we’re like, ‘okay, put the ducks in the bucket and let’s go’. And I guess my thought is, even if she takes that into adulthood, that isn’t a serious concern because my attitude is when I’m in the office, I have Walking Dead zombie figurines on my desk. So, what’s the difference if she has rubber ducks or little different ducks on her desk? Like, it’s something that you’re interested in. That’s just something that makes them happy. No one has treated me differently because I have my little Walking Dead zombies on my desk. It’s just an interest of mine.
Lia: Sometimes people feel ashamed or embarrassed because their child stands out from all the other children. And a lot of times there’s a feeling of ‘my kid’s going to get bullied or my kid’s going to get harassed because they’re doing this weird thing and everyone’s going to be watching. And those kids are going to make fun of him.’ But I just think that’s a completely backward way of approaching it. It makes more sense to be like, ‘oh, look at what my kid just discovered!’
Matt: The thing that we’ve seen is the splinter skill, kind of specialized skill that they are off the charts impressive with.
Lia: Not all autistic kids have that. So there are autistic kids who have the lower IQ issues. And so I do like to consider that as well, because I know it’s not the same situation for everyone, but I do think that in terms of what is Autism Spectrum Disorder, all you really need to know is that it’s a neurological condition. It’s something that typically the research indicates you’re kind of born with. It seems to be mostly genetic. And it also seems to be very different from person to person. So not every autistic person presents the same way. Some people can be really hypersensitive to sound. Other people might flourish under certain sounds. Some people might really have to be very organized and line their things up properly and it might bring them joy. Other people find organization in chaos. So it’s just very different. I know with our kids, for example, one of our kids is super motion seeking. This kid loves to spin and jump and bounce and run. And the other kid is kind of more laid back and more chill. She likes to just sit in her area, organize her toys, line them up in a row.
Matt: And she likes her flashcards.
Lia: Yeah. She likes to have a more structured sort of setting. Whereas our other kid is more rambunctious, but they’re both autistic. They’re just very different kinds of autistic. So I think that’s the other problem is that a lot of times there’s this misconception of autism. It’s this label that I slap on you and it means you need to be treated accordingly to X, Y, and Z plan or I need to make exactly these accommodations for you. And the thing is the accommodations are never universal. You need to custom tailor everything to each individual child. How I approach my child might not be the same way you approach your child just based on their varying degrees of needs and wants.
Matt: One of our daughters isn’t a fan or wasn’t a fan until recently of having water on her. She had a huge water phobia. We had to slowly transition her. Our other, older daughter, she loves water. She loves being in water and we leave her in the bath, just playing with her toys after a bath because she’s just having so much fun. Same thing with the lights. Autistic kids are much more sensitive or perceive light in a different way. And then also, as far as the concept of taste, you might have a picky eater on your hands.
Lia: The light concept itself — so a lot of times there are autistic individuals who are hypersensitive to light. These might be individuals who might prefer to wear sunglasses, or they might prefer to just be in shady areas. And then there are kids, like our kid, who are obsessed with lights. If you give her LEDs, she will sit there and shine them directly on her eyes as long as she can unless you take it away. So it really is like a drastically varied spectrum. And that is why it’s called Autism Spectrum Disorder now and not just Autism because no two autistic people are the same. And to that effect, it really does matter how you treat each individual autistic person because you have to accommodate accordingly. Our two children are completely different cases.
Matt: And that’s why I think we made the naive mistake at first because we were using our oldest daughter as the anchor point of,’ okay, this is what autism is’. And then when we had our youngest, we were like, ‘oh no, she can’t be autistic because she’s nothing like her sister’. And then we had the wake-up call of, ‘okay, she can still be autistic. She’s just on a spectrum’
Lia: Yeah. And then on top of that, the other issue we ran into is once we did find out she was autistic, then we’re like, ‘Okay, we’ve done this before. We can tackle this’. And so we essentially started tackling it and by tackling, I mean, helping her with her language and things like that because she’s non-verbal. We basically started to approach it the same way we did with our first kid trying to expose her to language. But then we realized that was not working at all with our second kid. We basically had to do a completely brand new system for her. And honestly, it’s something we’re still working on with her because she’s still pretty much non-verbal. Whereas with our first kid, everything that we did actually worked and she was able to expand and progress with her language fairly quickly. So it really is a matter of just make sure you have the time and patience for each child if you have more than one autistic child. Make sure that you just custom tailor everything to that child and let your child lead the experience. If they are not enjoying the way you’re teaching them something, then try something new, let them guide you. And don’t ever force your child to do something that they don’t want to do because that’s not going to be conducive to learning. And honestly, you gotta be careful about what you want your child to learn. You want your child to learn to embrace their autism. You don’t want them to learn that autism is this bad, boogeyman thing that they have to basically get rid of. So it’s more about accommodating it rather than trying to change it or remove it.
Matt: Great point that each kid is different. So don’t go in with the same mindset of, ‘this worked for this one. And let me try the exact same thing’. Each kid is a little different. You’re going to need to learn what their strengths are, what their weaknesses are, and then focus on the weaknesses. And hopefully, from there you’ll be able to see some improvement.
Lia: Let’s talk about some red flags that we saw because I know that with each kid, we basically saw two completely different sets of red flags with our first kid. We, we really saw some, honestly the day she was born, but we didn’t realize that they were red flags because she was our first child.
Matt: So I think the first thing was when she was a brand new baby, she never really cried. She would never show that she was hungry or needed a diaper change. We just thought she was the greatest baby in the world. We were like, ‘wow, everyone complains that their baby is crying and ours is as quiet’.
Lia: She would sleep for five hours in a row throughout the day. Remember that? And we would be like, ‘oh, she’s such a good baby.’
Matt: And then even at night, when she was hungry, she wouldn’t cry and wake us up.
Lia: The only way I knew that she was hungry was because she would start viciously sucking her thumbs and her fingers — she never cried. And in retrospect, that’s like a huge red flag. She wasn’t able to communicate her needs and wants in that way. And later, as she got older, that was one of her things when she was hungry or thirsty, she was never able to express to us or even show us that she was okay.
Matt: We actually had worked with infants and toddlers just to get her to the point where she is requesting her needs to us. So if she is hungry, we’re teaching her some type of sign language to show us, ‘oh, I need a snack. I’m hungry.’ Just something.
Lia: We really had the most trouble with her. Because initially when she was really young, she was completely in her own little world. Like she was staring off into space a lot, not responding to her name, avoiding eye contact proactively. She would be very content just being in a corner and isolating. She seemed completely unaware of her surroundings. Like she didn’t really realize if there were people around.
Matt: She didn’t even care.
Lia: Right? She didn’t even care. If you tried to go out of your way to get her attention, she still wouldn’t respond or react. You really had to be like right in her face for her to even realize you were there. So that was one of the biggest red flags that we noticed that something was off.
Matt: Right. And I think the one saving grace moment with her was that she was obsessed with songs and music and nursery rhymes. So we were able to engage with her or get her attention through music. And we were able to slowly kind of work our way to getting her to notice we were there.
Lia: Right. With the other red flags, the things that we noticed were the hand flapping. It took us a while to even realize that she was doing it because there’s a period, a stage that babies go through where arm flapping is actually very normal. It’s very typical and part of their development. So she was always kind of doing it. And I was like, ‘oh, she’s just a happy baby’. But because she was our first child, I didn’t realize that there’s a cutoff point in age where a child is supposed to essentially stop that behavior.
Matt: Yeah, I had no knowledge one way or the other.
Lia: I remember when we did the evaluation, that was on there. And then the thing that really stood out to me too was the fact that she started lining everything up.
Matt: Right. Very OCD, everything in a line regardless. I mean, she wouldn’t play with a toy, but she would line the toy up with another toy.
Lia: Yeah. And it didn’t even matter what the toys were. She lined up water bottles, she lined up ducks. She lined up pretty much everything that she saw, even random things like crayons or whatever. She was just always lining everything up.
Matt: I think of like the truck and a typical kid would push the truck around, making the wheels spin on the ground like a normal truck would move, but with her, it would just be lining the truck up, moving it into a new location, lining it up with the other trucks or cars that she had to play with. So that behavior definitely stood out as something that seemed a little different that I wasn’t used to, or hadn’t encountered before.
Lia: Yeah, and then there were a few other things. She had low muscle tone and she never crawled. So that was something that was a red flag for us too, because when she would try to crawl, she would get kind of in a crawling position but then her legs would kind of just frog-leg out. So they were like spread out and she wasn’t able to get the strength to push her knees up under her and prop herself up into a crawl position. And I remember putting her into that position physically for her and then as soon as I would let go, she would just flop back down. So that was something very unusual to me. And I was a bit concerned. Because that seems like a medical issue to me.
Matt: Right, it seemed like a definitely very delayed and developmental concern. Transportation was basically doing a barrel roll, just rolling, and then trying to reposition and then roll to wherever she was going. And then I think we first noticed that she was starting to walk at around 13 months, but before that it was basically rolling and us carrying her, picking her up. But there wasn’t any other type of movement.
Lia: These were basically a couple of red flags that we saw. Honestly though, there’s a lot of red flags. We could probably go on days and days talking about how many red flags we saw.
Matt: Well, these are all the early signs. I would say these are all probably one year and younger.
Lia: We basically noticed pretty much completely different red flags with our second child. Our second child was more of an active baby. Her red flags were primarily things like spinning, running, jumping, constantly crashing, constantly seeking sensory feedback. She would bring blankets to us, for us to wrap her up in a blanket. She’s non-verbal so she basically just brought us a blanket and I knew what that meant. She also had a lot more of the feeding issues. So our first child had feeding issues as well. She had sensory aversions to certain foods and textures, and it was really limited on her diet. And then our second child has been so limited that she’s actually been restricted, mostly to purees and baby foods, even though she’s going on 20 months old now that’s basically been her primary die. I think with the second child as well, we had issues with severe water aversion. Like she hated water.
Matt: The first one was spitting the water and now this one or second child wouldn’t necessarily have anything to do with it.
Lia: I was working with occupational therapy and it literally took me a month, a full solid month to get her comfortable with taking baths. I had to slowly transition her into the process and now we’re able to get her to take a bath, but it was just such a problem initially with her.
Matt: As an adult or a parent, being able to focus and put yourself in their shoes and see, ‘okay, this is a sensory experience that they’re having’ and from that trying to gauge, ‘okay, so they don’t like when water splashes on them when they accidentally spilled a water bottle on them, and they don’t like how that feels’. And then being able to understand that they might not be a fan of taking a bath just because of the same sensation and experience as well.
Lia: I think also the things that we started to notice were the tiptoeing behaviors with both of the kids. So both of the kids had tiptoeing behaviors. You know, initially tiptoeing is not a big deal. It can become an issue later on because it can cause the tendons to shrink. So some people even require surgical intervention. When we notice that they were constantly tip-toeing that was a huge concern, which honestly I did not know that was a symptom of autism. Initially, I had to basically mention it during one of the therapy sessions and they’re like, ‘yeah, that’s associated with Autism Spectrum Disorder as well’. That’s something that both of them have done and we’ve worked with them. They still honestly do it on occasion, but it was pretty obvious in that first kid. Like she did it all the time, 24/7, and we really had to work with her. With our second kid, it wasn’t as prevalent. It was a little more discrete and because of that, we weren’t quite sure with her either.
Matt: I think another area that we’ve noticed that there have been some red flags with both of our girls would be the meltdowns that they’ve experienced and difficulty transitioning. I’ve noticed that it’s more so with our oldest daughter for the transition period, that whenever she’s either playing or watching TV and we try and change activities, she has a hard time transitioning.
Lia: She’s had a difficult time transitioning from one activity to another activity. For example, taking her on a car ride. If she was playing with her toys in the house and then we have to go to get groceries or something like that and it’s time to pack up and go in the car, she would have a huge meltdown where she would just throw herself on the floor and cry in hysterics. And we would have a hard time getting her to kind of calm down just to be able to bring her to the grocery store.
Matt: And sometimes we have to avoid some of these places in general.
Lia: She just gets sensory overload and she can’t handle the noise, the music, the talking, the movement, the flashing lights, and colors. So sometimes those things would trigger meltdowns. So that was something that we noticed that was happening. But we at the time didn’t know it was due to sensory overload.
Matt: And it’s not just that she will refuse to walk to make you carry her because she’ll fight because she wants to be on the ground. And then she’ll insist on sitting on the ground or lying down on the ground and basically dead weight if you try and move her.
Lia: And a lot of people get tantrums versus meltdowns confused. So I’ve heard people say, ‘you just need to learn how to discipline your child’ or ‘oh, that kid is spoiled’. And that’s another common misconception with autism. When a kid is having a meltdown, it’s not the same thing as a tantrum. And there are ways that you can differentiate between the two. I kind of knew it was getting a little bit extreme when it would just happen out of seemingly nowhere because there didn’t seem to be any specific triggers.
Matt: And it seemed like it was for relatively minor things as well.
Lia: Yeah. Like if her ducks weren’t all in a row.
Matt: Or if her sister was stealing her ducks.
Lia: Right. Oh my gosh, don’t even!
Matt: But it seemed like it was for what I would consider relatively minor things. It would be a huge life-altering meltdown.
Lia: So if you notice that your child is having what appears to be a massive tantrum, pay attention to what’s triggering that tantrum. Just pay attention to see what’s going on to see if it is in fact a tantrum, or if you might be seeing a red flag for autism. If it’s being triggered by something that might be sensory-related; if they are having difficulty with too many loud noises there; if there are too many people over there; their routine has changed and you change the decor in their bedroom, it might just be that your kid is actually having an autism meltdown and it’s not actually a tantrum. So that was one of the things that we had to learn to distinguish.
Matt: Right, I think we had family members come over. It was still a relatively small gathering, but, I think it was just new people in the house that she wasn’t accustomed to. And just the change in environment, people talking, being a little louder than just the two of us.
Lia: She was totally overwhelmed with all the relatives coming over. The noise of the wrapping paper being ripped up and just the movement, the shuffling, everyone laughing and talking. It was just overwhelming for her.
Matt: It wasn’t over the top; ‘cause even you describing it, as far as having family come over, there were only two additional people who had joined in that Christmas.
Lia: To a normal person who is just thinking that they have a typical child it would seem like your child is just overreacting. You’re like, ‘why is she freaking out when we only have two people coming over? We’re just opening presents’. But in retrospect, now that we have all this experience with autism, we realized that it was that change in her routine and sensory overload, all the ripping of the wrapping paper and all the noises from just conversing. Cause there wasn’t even any Christmas music playing, but we also had all the Christmas lights going and we had all the decor. So it’s just complete sensory overload.
Matt: I think if we’re looking at individual things. It was very small changes. But I think for her, each of those small changes snowballed and made a huge difference that turned her world upside down.
Lia: Yeah, exactly. Once we started realizing that, we started recognizing more red flags and that led us to more stereotypical autism red flags that we started noticing. Other things that we really noticed with her were more like the echolalia. Echolalia is a common symptom of Autism Spectrum Disorder and it basically means that a kid will repeat what you’re saying, kind of like a parrot. So if you say, ‘okay, put your shoes on’, then your kid will repeat back to you ‘okay, put your shoes on’. Or they might just say, ‘put your shoes on, put your shoes on’ or something like that. That was something that we started to notice our oldest one doing, particularly when she was upset or frustrated.
Matt: I think for me it was the biggest thing because trying to comfort her when she was crying, I would reassure her. ‘Oh, it’s okay, you’re okay, you’re okay’. And kind of rub her back a little bit and then she would be repeating back to me. ‘It’s okay, you’re okay, you’re okay’. And then now if she’s upset, crying and I’m holding her, I don’t even have to say ‘you’re okay’. She’ll repeat back to me. ‘I know, I know, you’re okay’.
Lia: Yeah. Like she’s learned to associate the phrase ‘it’s okay, I know’ to when she’s upset. So she doesn’t really know what it means. She doesn’t understand that we’re trying to comfort her. She’s just in a sense, been conditioned unintentionally to associate the phrase, ‘It’s okay, I know, I know’, when she is feeling sad, upset, or frustrated. So echolalia is repetition, but there’s also something called scripting that our kid also did. Scripting is essentially when they memorize lines or scenes from movies or books or stories and they can repeat them verbatim. And that was a huge one with her.
Matt: The struggle with us at first was because she was struggling with language in general. Through the scripting, that kind of allowed her to pick up some words that she wouldn’t have ordinarily had.
Lia: Initially. One of the biggest things that you’ll see is a speech-language delay in Autism Spectrum Disorder. So usually kiddos will be flagged because they’re not where they should be with language. They don’t have the number of words they should have. So she was supposed to have 20 words by 18 months and then like 200 that you understand. But she definitely did not have the 20 words. Even the words that she had were just things that described things, but she would only use words to really just say things out loud. So she was never trying to communicate with those words. She wasn’t trying to tell me that the duck was yellow. She wasn’t trying to get my attention on the yellow duck. She just saw the duck, thought it was an interesting duck, and wanted to point out, ‘oh, look yellow’ like a yellow duck.
Matt: And it was the same thing with scripting. When she was a little older, she was able to repeat phrases that she had heard, but she wasn’t able to use them in any meaningful way. It was just repeating a random segment of words that she had heard from somewhere
Lia: And eventually, with time, I’d say like a year later she was able to use the things that she had memorized from scripting in context. So she will still script and say those lines from movies, but she will use them in a scenario that will actually make sense. One of her favorite movies is Blue’s Big Musical. And there’s a part where the little cartoon soap bar slips and falls. And he goes, ‘whoooOOOoooa!’ when he slips. So now every time she falls or she gets injured instead of reacting with a natural response, her reaction is to say, ‘whoooOOOoooa’, just like slippery soap. So she’s now learned to associate with what it actually is similar to, but she’s not able to come up with her own original reaction.
Matt: Right. That kind of goes along with having to be taught how to communicate. And I mean that going down to the play as well.
Lia: She’s actually gone through a lot of therapies because of that, but that was honestly one of the biggest red flags that we noticed. With fine motor, one of the issues that she had was she wasn’t able to, for example, put coins inside of a piggyback. So they had tested that during her evaluation and they noticed she didn’t have a fine pincer grasp. So there’s a lot of little things like that that we never would have noticed if it wasn’t for the evaluation.
Matt: That’s true. I would say she’s very rigid with any type of change of routine. So trying to institute any type of regular routine that isn’t what she’s used to or accustomed to is a struggle in itself.
Lia: For example, what I used to do is I would go to work and I’d drop her off at my mom’s, who would watch her while I was working. So that was the routine. Right? But then my schedule got changed up when I got pregnant with my second child. So I was able to work from home more often. And then the days that my mom would be watching her kind of would change. So she would get frustrated if I unexpectedly dropped her off at my mom’s. She would be crying and fussing because she’s not used to that. She was used to being home on those days. And alternatively, if I had her home on a day she wanted to go to grandma’s, she would be fussing and having another meltdown because she thought, ‘no, this is the day we go to grandma’s’. So that rigidity with the schedule itself was something that I thought was a little bit strange, but at the same time, I didn’t really think it was an autism thing.
Matt: Well we still see that today. She will want to go in the car if we don’t go for a car ride in the afternoon because we don’t feel like it, or life has changed and there’s another task we have to complete. She’ll be asking to go in the car and it’s kind of a little bit of a struggle letting her know, ‘not today’. It breaks up her routine a little bit.
Lia: Yeah. I think the very last red flag that we noticed, and this was more on our second child, we didn’t really notice it so much in our first child, but it was really that headbanging. We noticed online that a lot of families were seeing headbanging and I had never experienced that with my first child. So I totally didn’t even have that on my radar. But when our second child was born and she got a little bit older, she suddenly started headbanging. And that’s when I went from thinking, okay, I definitely don’t think she’s neuro-typical at that point, I was still kind of on the fence because she was doing like the — crashing, the running, the spinning. But you know, I was like, well maybe she’s just a more hyperactive kid with a speech delay. But then when I started seeing her doing the headbanging, I was like, there’s not really anything else that could explain that at that point.
Matt: Right, It seemed like the headbanging, she was finding it enjoyable because it was very similar to her running and climbing around.
Lia: Like a stim, like what the autistic community calls, when you essentially try to do things to self-regulate, they call it stimming. What we notice is she was only doing it when she was going to bedtime in the crib. So we basically were like, well, it might just be that because she loves to run span and crash and dive when she’s outside of the crib. When she’s in the crib, she’s very limited and she can’t do that. So she’s trying to find another way to get that sensation and get that body space awareness within the confines of her crib. So those were basically the major Red flags that we saw. There honestly were a lot more, but that’s, I would say the biggest ones.
Outro
Lia: to recap in this episode, we’ve touched on how autism is a spectrum and presents very differently in each child. Remember we’re not doctors, so always bring red flag concerns up to your child’s pediatrician or neuropsychologist.
Thanks for listening to embracing autism tune into our next episode, where we will dive into how to prepare for a diagnosis and answer questions such as how do I get my child evaluated? What can I do while waiting for the appointment and how can I best prepare for diagnosis day? See you next time on embracing autism.
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References
Basics About Autism Spectrum Disorder (ASD) | NCBDDD | CDC
Autism spectrum disorder – Symptoms and causes
Autism Special Interests
Age at autism diagnosis differs between boys, girls
Autism and Vaccines – Vaccines do not cause Autism
The SAGE Encyclopedia of Intellectual and Developmental Disorders
Toe Walking and ASD
Why Does My Child With Autism Echo Words and Sounds?
Scripting
