Parenting a Young Child with Autism

Mike:
Hi, this is Mike, one of CHC’s content editors on our Voices of Compassion podcast. We hope your day is going well. One of my favorite parts of my job is being able to bring mental health and educational content to our listeners. And we just want you to know that CHC is here for you if you need us. Before we begin today’s episode, we want to let you know of a special live stream podcast episode coming up on April 26th: The Problem with Overcoming Learning to Value Your Differences: Presented by CHC’s Voices of Compassion podcast, in partnership with NCLD and sponsored by the Schwab Learning Center at CHC. As people with learning differences and mental health challenges, we are often implicitly or explicitly taught to overcome our disabilities, try harder, push through, fix and succeed despite our challenges. These messages of normalization can cause us to develop shame, feel like we want to hide our identities and even decrease likelihood of success and increase mental health challenges.

Cindy Lopez:
Welcome. My name is Cindy Lopez, the host of this CHC podcast, Voices of Compassion. We hope you find a little courage, feel connected and experience compassion every time you listen.

Autism can present in many different ways, but at its core it’s about social communication. Autism is usually diagnosed at a young age because children don’t seem to be developing needed social skills, and sometimes people don’t even want to have their child diagnosed or even screened for autism because they’re afraid of labeling their child. However, with the diagnosis we’ve seen that children get the support and services they need. So listen to this special podcast episode, where we talk with CHC experts who are both parents of children with autism. Here’s Sarah Knepper, educational services manager at Esther B. Clark school and Dr. Cristal Byrne, licensed psychologist, both from CHC, talking about parenting a young child with autism. ​

Welcome Cristal and Sarah.

Cristal Byrne, PhD:
Hi, Cindy. It’s so nice to be here. Thank you so much for having me. As a clinician who assesses children with autism and a mother of a daughter with autism, I’m wearing two different hats in this conversation today. I’ve been working with children for what seems like forever, but specifically working with children on the autism spectrum for about 10 years now.

Sarah Knepper, MEd:
Hi Cindy. It’s really great to be here. Just like Cristal said, “I’m going to be wearing two hats.” I’m a special education teacher, and I also have son with autism.

Cindy Lopez:
So, Cristal as we get started, let’s talk about autism or autism spectrum disorder. What is that? Is there a typical age at which children are usually diagnosed with autism? Can you talk a little bit about that?

Cristal Byrne, PhD:
So, at its core ASD or Autism spectrum disorder is a lifelong social communication difference that exists on a spectrum, which means a few different things. So, first I wanna point out that it’s lifelong, meaning that an autistic person is born that way, there will be signs and symptoms in the early developmental period, in fact, that’s a diagnostic requirement, and it does not develop out of the blue when a person is 10 or 13 or 20 or as a result of isolation due to a global pandemic like COVID-19. It is always there. The second piece would be that it’s a social communication difference, meaning that the neural networks in the brain that underlie social awareness, social cognition, social reciprocity and social motivation are weaker in an individual on the autism spectrum than they are in a neurotypical brain. So what this basically means is that while neurotypicals pick up on social nuances and social rules that govern our lives, without issue, autistics often require deliberate coaching or explanation because this part of their brain is weaker.

And lastly, it’s a spectrum, meaning that while the two core diagnostic criteria need to be present in anyone who is diagnosed with autism, so that would be social communication deficits and restricted interest in repetitive behaviors. How they present in the individual autistics varies widely.

Cindy Lopez:
For our listeners, we have lots of great services at CHC, and one of them is our Early Support Program for Autism, or ESPA, that we do in relationship with Stanford. It’s ESPA and you can find information about that on our website at chconline.org.

So typically when parents come to you with questions, how did they find you? How did they get there?

Cristal Byrne, PhD:
It really depends on the age of the child that’s being assessed, right? So, you know, for my younger clients who are three or four, typically it’s a pediatrician who referred the family. It’s likely the case that they’ve been watched since they’re about 18 months, that’s usually when the symptoms start to become more obvious to, you know, medical providers and sometimes even parents. And so my experience has been that kids who come to me at about three or four are typically, they’ve been on somebody’s radar since they were about 18 months. The medical professionals usually waiting to see like, okay, is language gonna develop? You know, are the social skills gonna develop? And then usually between three and four, when they haven’t, that’s usually when they’re referred to a licensed psychologist to get a diagnosis or for it to be ruled out.

Cindy Lopez:
Mm-hmm. It’s interesting cause as an educator, which is my background, I’ve seen lots of kids with autism in a school setting at various places along that continuum of autism spectrum disorder. I see some of that rigidity that sometimes comes with ASD, or I see some of that inability to transition well, or I see some social challenges. Is there a set of kind of typical characteristics of a child with autism or is that different with every kid?

Cristal Byrne, PhD:
That’s a really good question, and I’m glad you asked it because I think, you know, when we talk about autism, we talk about it today as it being a spectrum, like I mentioned. So, I know it’s really cliche, but if you’ve met one person with autism, you’ve met one person with autism, right? And so I think that there’s definitely some overlap. The two diagnostic criteria for autism is having a social communication difference, and then of course the restricted interest and repetitive behavior. So those two things have to be present. How they present is wildly variable just depending on so many factors, right? So kids who are, you know, more moderate to severe typically get caught earlier. Kids who are more mild and who are able to learn and pick up the skills that they can from their environment typically aren’t caught until later. So, you know, when I think about the kids that I’ve diagnosed over the years, there’s kind of three main groups, right, three or four, somewhere around 8 to 10 and then again sometimes in like the teenage years, so kind of right before kids are getting to high school. So like middle school, 13, 14 I see those are kind of the primary age groups. And I think that’s a reflection of the fact that our social worlds become more complex as we get older, right? And so you know, one kid may not struggle when they’re younger, but by the time they’re 10, they’re starting to have conflicts with peers. So I feel like that’s something that I see a lot in some of that 8, 9, 10. It’s clear that they realize that there’s something wrong, but they don’t really know. So sometimes kids get into a lot of arguments with their friends. Sometimes kids will totally kind of shut down. And so you see a lot of like kind of a stepping away a lot of times. So yeah. So it just really varies.

Cindy Lopez:
Yeah. It’s interesting. So it sounds like the core of autism is that social communication piece and that is present among all those ranges you talked about, and so do you often see parents who are in denial about their child? Do you find that parents have difficulty considering autism? Is there still some stigma attached to that?

Cristal Byrne, PhD:
In my experience, yes. I would say that oftentimes parents come in and they have been primed that their kid might be diagnosed with autism and usually those are the younger kids, right, because the pediatrician has already kind of told them like, you know, these are some concerns you really need to go get diagnosed. And typically those kids do meet criteria and so I think for my younger kids, the families are a little bit more prepared. They’ve had a medical professional point out to them that autism might be a possibility, but still, you know, I think it can be an overwhelming diagnosis to get because there’s so much misunderstanding around what autism is and what it means. And, I think popular media has not done us any favors in that regard. You know, I think autism is portrayed in a very specific way. And so it can be scary for parents cause you know, they’re thinking like, oh gosh, my kid’s gonna be like, Raymond, or, you know, Sheldon from Big Bang Theory or whatever, and there’s absolutely cases that look like that, but there’s just such variability.

Cindy Lopez:
So Sarah, as a parent of a child with autism and an educator was that difficult for you when you first were considering, you know, what’s going on with your child?

Sarah Knepper, MEd:
Yes, in some ways. So my particular situation is much like what Cristal said where I noticed pretty early that my son was not meeting some milestones. He was not meeting many of the gross motor milestones and if he was, he was meeting them on the very late end. And since I’m in education, I knew that probably meant something, um and so I talked to my pediatrician and at first my pediatrician was not worried. And like Cristal has said, “pediatricians often like to wait until about 18 months to really get the ball rolling.” So my pediatrician was not worried, but I was and so I spent a lot of time really looking at what he was doing, looked at the milestones, and unfortunately I did a lot of like doctor Googling. So I wouldn’t necessarily recommend that, but when I got the diagnosis he was about two and a half. I actually felt immediate relief because I had spent so much time in the gray area of not knowing and uncertainty. And I mean, the adage that comparison is the thief of joy is really true. I had spent a lot of time sort of mourning the son that I thought that I was going to have, which I know sounds maybe silly, but that is the process that I went through. So when I got the diagnosis, I was actually very relieved and I felt like I could start to think about possibilities and potential and start accepting who he was and really look at what he was going to be able to do versus hyper-focusing on what he couldn’t do. So that was my personal experience.

Cindy Lopez:
Yeah. It’s interesting cause I see some comparisons between ADHD and ASD and for whatever reason parents tend to be more accepting of ADHD as a diagnosis than autism, maybe because there’s a perception that you could kind of fix ADHD either one of you wanna comment on that?

Sarah Knepper, MEd:
Yeah, I mean, I think especially from the educational point of view, you know, I’m a special education teacher, so I see that a lot of parents or some parents maybe think that well ADHD can be fixed with medication, and so I think the process of acceptance that your child has autism means accepting that, like Cristal said, your son or daughter will always have autism. Your child will always have autism, and so I think that’s like a required part of being a parent with a child with autism is going through that acceptance.

Cristal Byrne, PhD:
I was thinking while Sarah was talking about her experience with her son being diagnosed with autism, I thought it might be interesting to kind of compare it to mine because it’s similar but so different, you know, like we’ve talked about before, my daughter is on the mild end and she’s a girl, right? So I think it’s interesting because as a clinician and somebody who’s experienced diagnosing children with autism I noticed symptoms about 15 months. And I remember I mentioned them to a friend, like, hey, you know, who also diagnoses kids on the spectrum and I said, you know, I’m noticing these things. And she was kind of like, “yeah, I’ve noticed them too.” So it was really me that brought it to the pediatrician’s attention because she’s a girl, it’s often not on the radar. Pediatricians are looking for, you know, the little boys, right, who are more stereotypically have the classic autism symptoms. My daughter had the classic autism symptoms, you know, the eye contact wasn’t there, the social referencing wasn’t there, when it definitely should have been, but I think in large part cause she’s a girl. And so my experience was really having to go to the pediatrician and say, hey, look at this, and then when I brought it up they were like, okay, yeah, I see what you mean, and then that kind of got the ball rolling, but it was like, I brought it up at 15 months. At 18 months I think we had met with a developmental pediatrician at that time. It was in the height of the COVID pandemic, so of course everything was online. So they did an evaluation of her online and they were like, oh, she looks fine. Let’s check her again at two. So then at two we go back, and at that point it was online still, and, oh no, she’s fine, right? I actually had to email the clinician at this point I had sort of stepped back and I hadn’t really told people what my background was and at that point I had to step in and say, look you I diagnose kids on the spectrum. I had to like beg like, please see my child in person because what you’re seeing on the computer screen is not realistic. It’s just not an accurate representation of who she is. And so they saw her in person and, you know, within about five minutes they were like, yeah, she’s on the spectrum. So, my experience was actually having to like, kind of fight, to get people to recognize it, and I don’t know why that is. I don’t know if it’s cause she was a girl. If, like I said, it was the middle of the pandemic, so she was being examined on the computer screen, you know, telehealth. Yeah. It was interesting because it was like I was fighting so hard to get the diagnosis and then once I got it, I was kind of like, uh oh, now what? You know, like, and so How is her life gonna change because of it?

Cindy Lopez:
It’s interesting to hear this parent perspective from both you and Cristal. I’m wondering, Sarah, what you first noticed about your child that made you think autism or getting some outside help?

Sarah Knepper, MEd:
What I noticed that made me think autism, he was not meeting any of his speech and language milestones. And so, communication was a big struggle for him. He was a very late speaker and even when he did speak it was very difficult to understand him. And then along with that, he also had some issues with language reciprocity. So when he would speak it wouldn’t necessarily be in relation to what we were speaking about he was just talking. And so, that was really the first sign that I noticed that made me think autism in particular. And so similar to Cristal I went to my pediatrician. They encouraged me to wait and see what language would develop, and then I did not feel that waiting was in his best interest, and so I asked for a second opinion, and they referred me to a developmental pediatrician. And then once we got to the developmental pediatrician, there were all sorts of forms and rating scales that I filled out and pretty much all of those indicated autism, and so from there it was a pretty seamless diagnosis and then from there services as well.

Mike:
CHC’s Voices of Compassion podcast is made possible by the generosity of people like you. To learn more about supporting CHC, go to chconline.org/donate. Also make sure to follow us on social media for more inspiring and educational content from CHC.

Cindy Lopez:
So Cristal, how can parents understand what’s typical and what’s neurodivergent or not typical? Even as I say that I think about neurotypical versus neurodiverse and how we use those terms, and I think we’ve tried to be more inclusive by using the term neurodiverse, but in some ways we’ve come to understand neurodiverse as like a less than kind of category, maybe you can talk about that.

Cristal Byrne, PhD:
So I’m thinking about the typical versus, you know, atypical, and as it relates to autism, like we’ve mentioned a lot before, I think the two main things that you’re looking for would be sort of the social communication piece and the repetitive restricted interests. So the social communication piece, when we’re talking about in the early developmental period, kids eye contact is a big one, right, so non-verbal communication. You know, by the time a kid is at one years old they should be trying to communicate with you in other ways, even if it’s not language based. So that can be eye contact, it can be pointing or grunting or gesturing towards something, right? So, if you’re not noticing those things, I think, you know, that can be a red flag.

Sarah Knepper, MEd:
You saying this brings me back to when my son was one and those were actually the things that he was not doing, and I was very, very concerned because I thought, oh, you know, he’s one years old he should be pointing to what he wants, but he wouldn’t, he would just cry. And so I just wanna highlight that because that was definitely my experience.

Cindy Lopez:
Hm.

Cristal Byrne, PhD:
Yeah. So with my daughter, it was the eye contact. The other thing that I noticed with her between 12 and 15 months, at 12 months when it wasn’t online, I was kind of like, well, she’s only 12 months, but by 15 months when it wasn’t online, I was like, okay, something, you know, this feels like just a delay or something. She wasn’t doing a lot of social referencing, so if she saw something she thought was cool, she would go over there and like play with whatever thing was cool, but there would be no referencing back to me, like looking back at me like, oh mom, did you see that? You know, that kind of a thing, that should be starting to come online about that age. I think it really doesn’t come on fully until later, but I think because of who I am as a clinician when I didn’t see that around 15 months, I thought okay, in combination with the lack of eye contact, it was kind of like, okay, this might be something more, and I think those are two really big things for parents to be considering. Those things should be coming online early.

And then the other piece, of course would be the restricted interest and repetitive behaviors. So, a lot of times with kids, this can be, you know, the stereotypical one is flapping, right? So when kids get excited or overwhelmed, they start flapping their hands. So that’s a really common one that most people know about, spinning, jumping to an excessive degree, right, or not even to an excessive degree, but more so than what a neurotypical kid would do. So yeah because, you know, we’re all individuals and we’re all different, so there’s a lot of fluidity and like, is that too much? You know, are they spinning too much? Are they flapping too much? You know and that’s tough, right? It’s tough to pinpoint.

Cindy Lopez:
Just a word to our listeners at this point, you might have a child with autism, you might not, and I think that’s part of what we’re trying to say here. Don’t assume that because you’re seeing some of these things that we’re talking about that your child has autism.

Cindy Lopez:
So Sarah, as a parent, I’m wondering what went through your mind when you received the diagnosis of autism for your child?

Sarah Knepper, MEd:
So when he was diagnosed with autism, I felt a sense of relief. I felt that I could, you know, I could start to focus more on the potential and the person that he was going to be. I could stop worrying, and so I found a lot of comfort in that and a lot of acceptance, so for me that was really helpful. Because I’m a special education teacher I also felt like, okay, I know who to go to for help, and I know who to consult with. I know that he’s going to need speech and language services. I know that he’s likely going to need occupational therapy services, and I know how to advocate for that and so for me that was very comforting, and I felt that I had a sense of control over the situation, and the thing is I know that we as parents have no control over situations and that’s been something I’ve had to learn as a parent, but in a situation in which your child gets any kind of diagnosis, that sort of feeling of out of control can sometimes overwhelm you, and so having a path forward really helped me.

Cindy Lopez:
As you experienced that and on your journey, that path forward that you just referenced. Did you find some specific resources that were helpful to you?

Sarah Knepper, MEd:
Yes. So, I, would say the most helpful resource was finding a network of parents who also has children with disabilities, particularly children with autism, that was really helpful to me. A feeling of community really helps us in life, and so I felt like I had a community. And so I was a part of a Facebook group of other Bay Area parents that also had children with autism, and then I also had some friends and people in my local community that also had children with autism, and they were various ages. And so before we had the diagnosis, I had a lot of friends who had neurotypical children and they were always talking about what their kids were doing. And of course, like, they’re my friends, I wanna hear about what their kids were doing, but every single time I would feel this like sense of, oh, I have nothing to talk about in that realm. I have really no words to talk about, you know, he’s not doing any of that so I would kind of have a pit in my stomach, but then once I found a community of parents with children with autism, all of that kind of went away, and we could talk instead about the things that we were experiencing and the commonalities that we had. And to be honest that was probably the best resource. And then because he qualified for birth to three services, I also had a community of professionals that I can consult with who had lots of experience working with young children, an occupational therapist, he had a physical therapist and he also had a speech and language pathologist. And so I finally felt like well, these are the people I can talk to, these are the people that can develop goals and we can talk about, you know, different strategies that I could use at home. We could talk about what I was seeing and what that meant. I mean, cause I’m one of those people that like wants to know, like I’m not very comfortable in the unknown, and so I would just ask a lot of questions, and once I got the explanation, I felt much better. So like, I think one of the biggest things that he was doing pretty early on is that he would get very stuck on having an object in his hand and there would be a lot of stress around, like, we couldn’t find that object or if that object just wasn’t appropriate for that particular situation. And so I felt like with the birth to three services, I was able to talk about alternate ways that he could get that same need met without it becoming very stressful in the family life. So those are the resources that really helped me.

Cindy Lopez:
As you were talking too, I went back to the quote, comparison is the thief of joy, right? And I think for parents, especially of young children, when you’re concerned about your child, that’s what you’re doing, you’re comparing, is my child doing that? Is there something wrong? And so Cristal, I’m wondering, as you have interaction with parents of all kinds in your practice, I’m wondering what advice you have for parents, especially as they are trying to figure things out, or maybe they’ve just received a diagnosis of autism?

Cristal Byrne, PhD:
I would definitely echo what Sarah said about resources and finding a community of like-minded folks and people who can help you out, you know, getting your team together. I think that’s crucial. But really I understand that it can be overwhelming, especially if it’s unexpected, but the best piece of advice I have to give is just to remember that their child is the same person that they were prior to receiving the diagnosis. Only now the only difference is that you’re armed with the knowledge to sort of help support them and understand their behavior in a different way, and I think that’s really important because I think a lot of times kids on the spectrum can just seem oppositional or defiant, right? And there’s not a lot of understanding about why they’re behaving the way that they are. I think once you have that diagnosis, it’s that light bulb that’s like, oh, okay. So I think it often provides families with a little bit more empathy and understanding of like why their child might be acting in a certain way and like you said, how to meet those needs in a way that’s appropriate for everybody. So that’s, I think the main thing I would say is that finding community and finding support and just realizing that this is a good thing. It’s a good thing because now you have the tools.

Sarah Knepper, MEd:
I really wanna echo this idea that you know, receiving the diagnosis really more than anything gives you a framework for understanding your child. I really believe that, and I think that the faster that parents come to that conclusion, the easier it is for you to be able to, understand your child.

Cindy Lopez:
Yeah, like you’re armed with information about your child that helps you, that helps your child, and that you can, determine your path forward. You kind of know, what that path could be or look like. So, Sarah and Cristal I’m wondering if there’s anything that you’d like to share with our listeners today as we wrap up.

Sarah Knepper, MEd:
I do think when you receive a diagnosis of autism for your child is using the resources that you have, the community that you find because that is what helped me the most, and I’ve felt very fortunate to be able to build the community of service providers and friends and other parents, and I think that that is what has really helped my relationship with my son.

Cristal Byrne, PhD:
And this is something that, you know, I’ve always kind of done, it’s kind of the way I understand different phenomena or things that happen in my life is I educate myself more about ’em and that’s something I’m always, you know, telling parents, you know, and they get their report and there’s like 10 books. I’m like, read these books. And I get it, like, you know, parents don’t always have time to read 10 books, but, you know, I think, educating yourself a little bit more about what autism really is and I think you sort of automatically or sort of naturally become an advocate for your child because you have a better understanding of what it is they might be dealing with.

Cindy Lopez:
Thank you so much for sharing your time with us today. If you are in this place where you have a young child and you’re trying to figure out what’s going on, please reach out. CHC is here. You can reach out to our care team at careteam@chconline.org or you can call 650-688-3625, and we also have free parent consultations. So you might not be ready to like invest your money in an appointment, but you can definitely arrange for a free consultation so you can come with your concerns, talk to a clinician who can provide some advice and guidance regarding next steps. So, thank you to our listeners for joining us today, and again, thank you Cristal and Sarah.

Cristal Byrne, PhD:
Thank you for having me.

Sarah Knepper: Thank you for having me.

Cindy Lopez:
Visit us online at podcasts.chconline.org. Make sure to subscribe to Voices of Compassion so you never miss an episode, and we’d love it if you’d leave us a rating and review. Have a question? Send us an email or a voice memo at podcasts@chconline.org. We’re here for you when you need us.