Episode 3 - Parental Process and Next Steps for Diagnosis

[MUSIC] Hello and welcome to the on time autism intervention podcast, a podcast for parents of children, three and younger, dedicated to providing accurate information about autism, autism intervention, and guidance for your new path. This podcast is brought to you by the University of Washington's on time autism intervention, or OTAI, where a collaborative project led by the UW's Autism Center and Hearing Center for Inclusive Education. Our work is supported by the Seattle Foundation and aims to increase equitable access to timely diagnosis of autism spectrum disorder and evidence-based intervention for young children and their families. We are so glad you're here. Hi, everyone, and welcome back to the on time autism intervention podcast. Yay, hi, Ashley. We have such a great interview lined up today. I cannot wait. Me too. Today, we are going to be talking about the parent experience of diagnosis and really diving into understanding parent readiness for getting a diagnosis. And we have a parent joining us, Luisa, and her son was diagnosed before he turned three. And she's going to talk to us about what that was like for her. It's going to be really good. So to get us warmed up, why don't we reflect a little bit on what we talked about last time and a bit about our approach and recommendations around early identification? Yeah. So last time we talked with Emily, she is a birth to three special educator, and she really helped us understand the process of entry into birth to three services. But Jess, can you talk a little bit more about why we think it's important that all roads lead to birth to three as a first stop for families who are considering an autism diagnosis? Yeah, but it's a good question, Ashley. And I think it's really important that families approach the diagnosis with support, whether it be family members, a therapist, teachers, somebody who knows them and knows their child who can really help them understand what the diagnosis means for their child. I always say that the diagnosis is just a moment in time. It's really a gateway to accessing services and intervention and support and information. And it's better if it doesn't happen in a vacuum. And my experience through the on-time project has really shown that the process of getting a diagnosis can really be better for a family, a family of a child under three, if they're feeling supported and ready and have someone to continue providing support in an ongoing way after these diagnostic visits are over. And my experience has been that the support from birth to three really always enhances the feeling of support for families. The idea that we encourage all families to start with birth to three has to do with that really being the first step for families in terms of their readiness for getting an autism diagnosis. Yeah, I hear this from parents too. And I also think it's worth mentioning in this episode a little bit about why we're called the on-time autism intervention project. And originally this came from our belief that really young children can't and shouldn't have to wait for diagnosis or to wait for autism services until after they're diagnosed. But that really that a diagnosis and entry into services should be available as soon as those characteristics and signs of autism were present. And that this should be considered on time, rather than early diagnosis or early intervention. But what we have also come to understand in our work with parents going through this process is that what's considered on time may really be different for each child or family. Yeah, I think that when we talk to Louisa in a moment, we will again highlight some of the theoretical models that we've used, like something called the Purchasca model for change that it really helped to form our framework. And the idea is that that parents come to a place of readiness for pursuing diagnosis at very different cases. Right, yeah. Well, I think we'll have a lot to hear from Louisa. So shall we dive into our conversation with her? Let's do that. I think it's time. It is time. Yeah. Okay, Louisa, welcome and thank you so much for talking with us today. Today we've been talking a little bit about parent experiences around diagnosis and readiness for pursuing a diagnosis. So thank you so much for being here, Louisa. Thank you for having me. So our first question is just about who first mentioned or recommended that you seek out an autism evaluation for your child? So actually the first time that autism came to my mind, it was because I noticed that my son was in pointine as much as other children he's age. And I brought up this concern to his pediatrician and he told me that he had no autism related concerns. And so I remember at the time that he said, it's perhaps that you're a very intuitive mother and you're not letting him kind of make the effort to communicate his needs before you fulfill them. So just work on that for a little while. And so but I just I just had a feeling that he needed more specialized support. So I decided to reach out to a local early intervention organization to get services to help him with communication skills and language skills. We speak four languages at home. So I thought maybe that was confusing him. And then it was the speech therapies that he worked with that was the second person to bring it up. Okay. And how did that conversation go? It was over several it was not really one conversation like she brought it up several times and kind of like a small ways like little small comments and things like that. So there wasn't a particular conversation, but I do know that I whenever she brought it up, I felt actually pretty defensive. I think I was just really afraid that you know I thought about it before when I talk to the pediatrician, but I didn't really know much about autism then. And so I just wanted things to be easy for my child and for us. And so whenever she brought up those little pieces, it was really hard to receive. So Luis, it sounds like it was the speech therapist who first said the word autism. Is that right? So actually it was kind of the internet because when I was googling on my own like you know my like stages and milestones and things. And so when I I took a random like autism like thing online that like sent me like into fear about it. So that was the first time that I thought about autism, but then after talking to the early intervention organization and like having some services for him, I kind of switched my ideas and thought, no, I don't think this is autism. I think this has to do with the ways that we communicate at home, the languages that we speak. And so I kind of went like, no, that that's not what's happening. And so then when she brought it up again, it was, yeah, it was kind of having to go back to that initial fear that I felt when I first googled it. So you sounds like you kind of vacillated between wanting information, thinking there might be something going on and sort of not not wanting to go there and just sort of waiting to see what was going to happen with early intervention. Yes, absolutely. I mean, I went back and for all the way until the day that I that we had the evaluation. It was back and for the entire time. So so kind of ambivalent. It sounds like a little like you wanted it, but a little like you were scared and not sure what this process was going to be. Yeah, I think I was like it was I was afraid to get to get the outcome to hear the outcome. And so I wanted support for him. I noticed that he needed support with things. And so I wasn't afraid to ask for the support, but I didn't want to hear the specifics of the like the label or a diagnostic or that was harder for me to get my brain around. So it seems like what you're describing is really is something that lots of people go through when they're thinking about making a big change or making a big decision. And there's actually a whole body of literature about the stages of change they're called. And there's something called the pre-contemplation stage, which is where you're in a state of thinking about doing this thing. You know, you're thinking about exploring a diagnosis, but pretty pretty ambivalent and pretty not not ready. Can't really see whether the outcome's going to help you. And then there's contemplation, which is really kind of weighing the pros and cons, feeling like you really you want an answer and considering your options for getting the answer. And then there's a preparation stage, which is sort of lining up where you're going to get the diagnosis, who who's going to do it, who's going to come with you, so sort of preparing for that diagnosis. And then the action stage, which is like taking action and actually making the leap to make the change or to take action and get the diagnosis. Do you identify with these stages? Can you think about yourself kind of going through those four stages I've described? - Yeah, absolutely. Yeah, again, when the speech therapy brought it up, I felt super defensive, not ready to get an evaluation, mostly because that wasn't ready to deal with the possible diagnosis. And I actually had put my son on the waiting list for an evaluation months before, and when they reached out to me, I just never called back. So then I started grad school, and in my practicum, I began working with autistic children, and that was the first time I truly understood. I remember that she would say, often this thing, if you've met one individual with autism, you've met one individual with autism, but I didn't really, that concept didn't really truly sink in until I started working in my practicum, and I saw what she meant. And so that kind of started opening up my heart and my eyes a little bit, and then after talking with people in the field, and just letting time kind of sink in, I decided, okay, this is a possibility, like, what's the evaluation gonna do? I realized it was gonna do more good than not to have an evaluation. It would just finally answer that question in my mind. And so I finally reached out to the evaluation, to the place where I had him on the waiting list, and then from that point on, it just, they were so fast with the process of scheduling the appointment that I just really didn't have a lot of time to go back and forth anymore, and I just kind of was time that took me through it until it was done. - Wow, that sounds like a really individual and personal process, and sort of something that you needed to do. What is there anything that you can think of now and retrospect that your providers could have done to be helpful, to be more supportive, to anything that you can think of that sort of advice to the providers? - Yeah, so I think with initially, with the pediatrician thinking when I first spoke with him about my concerns, I think that taking seriously what I said would have been really helpful 'cause we would have been able to access early services so much, like a lot sooner, and they are so much easier to support is so much easier to access at that time. It seems like now my child's over three and so things are very different. And I think with the speech therapist, 'cause unfortunately after she brought it up, I just was never able to connect with her and feel safe with her again. And I think that, like thinking about it in retrospect, I think it's that there was no time for me to digest what she was saying and she was just saying it often. And so I think just allowing kind of the news to kind of sink in the thoughts, the input that she was bringing, if I was allowed to kind of just let it sink in a little bit more, maybe I would have reached out for support earlier, I think that I shut down when I started hearing it so much. - Interesting, so it sounds like she was pretty direct and maybe for you being that direct was a little bit off-putting. - Yes, yes. - I'm wondering, this is really helpful to just kind of hear because from the provider perspective, we don't always get to know what the impact is for families about the things we say. Was there anything that really you felt went well that you'd wanna highlight? Someone helping you kind of maybe somebody really being super helpful or taking extra time. - Yeah, I was actually once I got to the actual evaluation, the process of hearing the diagnosis was much better than an easier than I had expected. I already knew that we would get a positive, I already knew that they would tell us that he was on the spectrum based on how the evaluation had gone. But the way that she talked to me through that process was actually kind of one of those first few times that I felt like things are gonna be okay. She, for one, she was consistently checking in with me, making sure that I agree with her observations of my child and I never really felt like she was describing him or his behaviors in ways that aren't truly him. But she was also the first person to talk to me about neurodiversity and she reminded me that our family already consisted of so many different lived experiences like racially and culturally and so on. And so neurodiversity was really just one more of those differences that because of our lived experiences and the things that we were familiar with our capacity for understanding how other people would experience their life was so much more nuance. And so when she said that, I felt like although our society makes it difficult for people who do not feel a standard that the systems were created for our experiences wherein some way kind of our family's superpower, we could understand things better and hopefully because of that, we would have a better impact on people that we would encounter throughout our lives. - I love that. - That's super inspiring. I feel like our listeners are gonna be really inspired by that as I hear you saying you went from a place of being really fearful about what this was mean to really kind of just a place of acceptance and yeah, and empowerment. So that's really, that's cool. Thank you so much. - Do you know what I mean? But knowing that our listeners are maybe coming to this episode in any number of those stages that we talked about, what advice would you give to parents who are just starting down this road or just starting to consider going down this road? - Yeah, that's a hard question because I think that nothing that I actually, like nothing that I would say would actually make the process easier. I think that going back to that pediatrician, I would first say, just trust your instincts. You're the one that knows your child the best. And if you feel like you do need support and you're being told in different ways, even if they're very friendly kind ways that you are overreacting, then get a second opinion because sitting with that question of, am I overreacting or am I noticing something that my child needs is heavy? And so there's so much guilt that already comes with parenting. It's so easier to feel guilty for both of a reacting or not doing enough. So trust your instincts and get second opinions if you feel like you're not being here. And I would also say that not being ready and feeling frustrated with the process and people that keep bringing it up is natural. And so just be gentle with yourself. We just, in reality, we just want things to be easy for our children and for them to not have to face the world with labels that can't bring challenges to them. And so allow yourself to be frustrated that people might keep bringing it up and allow yourself to get their, um, and parents, you know, they want the best for their children. So know that if your family needs support in a specific way, you will get there. And you might not get there on the provider's ideal timeline, but you will get there in your family's timeline. And that, um, in my opinion, it's what matters most because we are not shutting down as parents. Our children are looking at us for cues on how to feel safe or how safe different circumstances are. And so when we feel more confident throughout the process, so do our children. - Wow. Thank you. I think, um, I love the idea of instilling and other parents that you, as parents, are experts in your children? Like I think Ashley and I often get looked at like, oh, well, you know this, you know that, you have your PhDs, you guys are experts, well, no. We're experts on a lot of things, but we are not experts on your child. And so I hope people take away from this the fact that they should really, you know, parents should trust their instincts and have the confidence that you sound like you have to follow those instincts. - Thank you. - Thank you so much, Luis. So this has been just really wonderful to hear about your experiences. And I think that it's really going to resonate with other parents. Is there anything else that we didn't ask you that you, you know, want to make sure that you share with us? - Um, I mean, I guess it's not necessarily a question, but just thinking of parents. That as you're going in this process, I guess one thing that I wish I would have had at the time was more relationship with parents who were already raising autistic children so that I wasn't as afraid of what it would mean. Like nothing changed about my child before or after the diagnosis. And so I guess just, it's always so good for us humans to surround ourselves with people who are different, including, you know, different, and brains. And so I think that that would have been a really helpful reminder back in the day. Yeah. Yeah. That is great. Well, thank you so much. Yeah. Thank you. Thank you. Lisa, I'd love to hear about something special that your child does that brings you and your child joy, something he loves that you love watching him love. Well, I'll tell you an experience we had today actually, because he's been in my mind quite a bit. He loves fans. That's one of the things that he loves. And he's so interested in like the mechanics of them. And he's trying to figure out how they spin and all of that. And it got warm today. So we pulled out an oscillating fan. And he just the way that he looks at things and observes the world just brings so much joy to our family. He looked at it for a few seconds and then turned to us and said, Hey, the fan only says no, let me turn around back to the fan and says, can you say yes? There is a lot of these and it just makes us laugh all the time. He's just such a such a smart kid and just so creative in the way that he looks at the world. I love that. I love that. But you I will never look at a fan and not think about how come he's shaking his head? No, and not nodding yes. So to the invention, maybe he'll invent nodding. Yes, man. There's actually a comedian that had a joke around that and I thought it was so funny. How do you quote this comedian that you don't even know? Oh, I love that. Thank you. We saw. Yeah, thank you both for having me. Yes. Wow, that was so great to hear from Luis. I really, really appreciate her taking the time to to share her experiences. Yes, yeah, she is phenomenal. And I had a great time listening to her. It's kind of interesting, but both of our two of our, you know, speakers now, our guests have been both parents and professionals. Yeah, and have had different, different kind of experiences too. Yeah, I don't think that that was intentional when we, when we thought of them, but I wonder, I hope for our listeners that that is helpful to hear from that perspective, but also, you know, for people to know that that that that they're not necessarily completely representative of every parent of a child with autism. Yeah, we'll just have to keep talking to more of them. Yeah, yeah, there are a lot of them and a lot of really neat people that have helpful and cool things to say. So we are out of time. Yes, but we've had a good time. We did have a good time. And we, I know people think we're super dorky for same time all the time. But we're, because we're on time, we have to emphasize time. So we also have to end on time. Yes, I guess you next time. All right, see you next time. This podcast represents the opinions of doctors Ashley Penny and Jessica Greenson and our guests on the show. The content here should not be taken as clinical or medical advice and as for information purposes only because each child is so unique, please consult your healthcare professional with any specific questions views and opinions expressed on the podcast are our own while we make every effort to ensure that the information we're sharing is accurate. We welcome any comments, suggestions or corrections of errors. This podcast should not be used in any legal capacity whatsoever, including but not limited to establishing standard of care in a legal sense or as a basis for expert witness testimony. 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