The Other Side of Autism Acceptance

We talk about acceptance. But what comes before?

An autism diagnosis can bring a wave of emotions that many parents aren't prepared for. The questions, uncertainty, and challenges that come with it can leave parents wondering " Where do I begin?"

In this episode we boldly discuss the parts of acceptance that are too often left unspoken. The personal side. The parent side. Beyond autism awareness and inclusivity, we're exploring what it looks like when acceptance becomes personal. 

We're quick to tell parents to embrace the journey. But we don't always  acknowledge the process it takes to get there.

About This Podcast: 

This Can't Be Stressed Enough Is where Black and Brown Mothers raising children on the autism spectrum come to be heard, understood and validated. Honest conversations about the challenges,  the wins, and everything in between. 

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Transcript

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Autism isn't just a label. And this isn't just a podcast. It's real conversations for moms who need it. So let's get started. Hello, hello, and welcome to This Can't Be Stressed Enough. I'm your host, Jade Marie. And for today's episode, I want to switch things up a bit. I would like to start off and begin with a question for you. So for this question, I don't necessarily want you to answer right away. Just kind of hold on to it, sit with it, and then as you listen to today's conversation, just think. And then by the end of the episode, I would like for you to come back and see if your answer still means the same thing. Okay? So the question's gonna be when you hear the word acceptance, what comes to mind? Maybe it's relief, sadness, it could be healing, or maybe even loss. Whatever your answer is, just hang on to it and we're gonna revisit it. Now, the inspiration for that question um was a threads post that I saw. And I have to usually be careful on threads because I know a lot of people go on there and they rage bait and they ask very loaded questions, they talk about loaded topics for the sake of engagement. And that very well could have been what was going on. But this particular question kind of bothered me a bit, I have to admit. And I'm paraphrasing here what she said, but basically, it was a woman. I don't know if she was a mother, I don't know. I'm assuming she was, but basically, a woman was like, why can't people accept that their children have autism? Why can't you just accept it and get over it? It would make life so much easier. I I get where she's coming from, and I I get why she said that, but acceptance isn't always that easy. And so that got me thinking. And I feel like a lot of times when we talk about autism acceptance, we're viewing it and speaking from a place of education. So, like, for instance, April is autism awareness month, right? We use that month to talk about awareness as well as acceptance. And then we talk about embracing people, individuals, inclusivity, all of those things. But I'm not really seeing conversations about accepting autism as a parent. So my question is, what does it truly look like when you're the one navigating all of like the appointments and the behaviors and the uncertainty and all of the emotions that only come from lived experience? What does autism acceptance look like as a mother? Because let's face it, acceptance isn't always just one concrete decision that you make after a diagnosis. And for some people, it may be. You know, some people they don't go through this long, drawn-out process, but that wasn't me. I can't, I can't relate to that. For a lot of moms, it is a process that looks different from person to person. And it's not always a process that progresses in a straight line. It's not something that is linear. And then the one thing that is very challenging is the fact that you're not really given any guidance on what that's gonna look like. You know, there's no rule book, no hand guide, or anything to tell you if what you're feeling and experiencing and the emotions that come along with this are wrong. But one thing that I noticed that truly helped me was, and and I didn't even realize it until sitting back and thinking about it, that I was able to separate the different parts of acceptance that I needed to work through. I think it was my mind's way of compartmentalizing everything so that I could work through it. Because I mean, we're not just accepting one thing, it is layered. There are nuances, and there's more than one thing as mothers, we have to accept. So accepting him as a child that has autism was one of the things that I had to work through. Another thing was accepting that my life as a parent was not going to be what I originally expected. And then there were all the other things that kind of fall in between the emotions, the thoughts, the worries, the concerns, the frustrations, all of those things that come in between. I had to work through all of those. And it wasn't necessarily all at one time. Now, where I found myself first was accepting him, accepting the fact that my son has autism. And I don't really think that there was a concise, oh, I'm going to start here point. I didn't consciously say, I'm going to start here. It was just more so of a priority to me that I never wanted him to feel less than. We had, we had our conversations about being different. And being different doesn't mean that you are less. And that, yes, you do have autism. And there are challenges that come with it, but look at how intelligent you are. Look at this, look at that, look at all of the good things, look at all the great things. You are still a person. All of these things I never wanted him to feel less than. So in order to do that, I also had to model that. I can't walk around not accepting that my child has this while also telling him that he needs to be proud of that. I need to model that because I am proud of him. So I needed to make sure, and that was a priority and very, very important to me that I worked through that. And to begin with it, there wasn't a defining moment that kind of just like pushed me into the process. You know, my introduction to autism wasn't a sit-down with a psychologist where they broke the news to me and told me, your son is on the spectrum. You know, I discovered it on my own. I fought, I noticed, I put two and two together, the pieces were there, all of those things. But while I was doing that, I don't think in those moments I truly realized that I wasn't accepting him. I was adapting to his behaviors. I was adapting to my environment. I was adapting to my child, but I wasn't necessarily accepting him and accepting that that was his reality. And that's what happens, I think, a lot of times when you operate from an autopilot state. You're just so used to going through the motions and doing this and doing that. But, you know, through the appointments, I knew, I knew he was on the spectrum. I knew he had autism, but apparently that did not mean that I was accepting the truth. The diagnosis helped. You know, there was a sense of validation that came along with that, and it reassured me that yes, what I am seeing is factual, what I am seeing is real. So go ahead, go ahead and accept him. It is okay. Go ahead and start that process. And I remember a moment. I don't know what I was doing at the time. I don't remember really why or how I ended up there, but I found myself in front of the mirror. And I just stood there and I stared for a minute. I stared at myself. And I remember saying, My son has autism. And I felt so many different emotions that I really, I honestly wanted to shut out. I didn't want to face those. And then prior to that, I recall, I recall either being in the car or being in the shower, those four words crossed my mind before that. But I never really gave myself a chance to sit with the emotions that came with it. Because I I didn't want to. And for a long time I didn't know why. Why was I denying myself that? But I think it was just because I wasn't ready to accept it. We have to admit that with that diagnosis and with our children and our child having autism, there's a lot that comes along with it. I was afraid, and I keep, I'm going back to that word afraid, the fear. There was a baseline fear that was there. And when I think of it, I'm I'm thinking about all the things that I was afraid of. You know, the communication differences. I was afraid that he wouldn't be able to effectively tell me what he needed, and if he was upset or if he was sad, or, you know, for some moms who whose children are nonverbal, they don't get to hear their children ever say mommy or tell them that they love them. You know, that is a that is a fear. That is that is a fear. You're afraid that you won't hear that. And then with that, can there's a connection. There is a connection that happens when two people are able to communicate with each other. And I was afraid because of those communication challenges that I wouldn't be able to effectively get to him and bond with him the way that I wanted to, especially as he got older. And then there were all the behaviors that come along with having autism and navigating those. And then again, initially, I didn't have the help. So I felt like I was drowning a lot of times. And then the milestones, the things that you clinically at least expect to see from your child and celebrate, those things that may not come, or if they do come, you don't know when. There's a lot of uncertainty and fear that comes along with accepting. But as I was able to work through over the years those fears and work through those fears and reassure myself and learn him, I was able to figure out that this child is the same child. I always knew, but remembering is important that this is the same child that you had before the diagnosis. They are no different. This is the same child that you held for the first time in the hospital. The diagnosis doesn't change that. You know? And I know it's sometimes it's hard to remember that in the rough moments, on the rough days, on the hard days. And then there are times, at least for me, that I can say that I was seeing the symptoms before my child, before I was able to fully accept him having autism. Yes, he does, but that is not who he is, that is not his identity. And I never want him to think that. Because yes, he has trouble with certain things. And yes, there are hard days. Yes, there are some hard things to work through, but he's not doing that to hurt me. None of this is malicious. None of this is with the intent to make me upset or sad. There's just certain things that are harder for him. And I had to realize that. And I know it's easy to say, it's easy for me to sit here and tell you this now. Oh, when when your child is crashing out, just remember it's hard. It is hard in those moments. But patience and practice and grace, you all of those things have to factor in. And I also learned along the way that I had to meet him where he was at. And I'm a firm believer in that. Your expectations have to shift, not be removed, but shift. Meeting him where he was at was probably the best thing I could have done. Because it takes that expectation out of the picture to where it gives us more room to just be free with how we're able to move along our day. So, like connecting with him, that was a big fear for me. But it was very easy that I could do that through dinosaurs. I learned that. Does he like Harry Potter like I do? No, but that's okay. We can't connect with that, but we can connect with dinosaurs. If I want to ask him something about his day, or if I want to get maybe something complex out of him that I may have to pull out of him, guess what we're starting with? We're starting with Parasaur Lofus. That's where we're gonna start. Meeting him where he's at. And for communication, realizing that I just had to find different strategies and understanding that it may take him a little longer to get out the words. And it may take a little longer for him to understand fully what I'm saying. I may have to say it a different way. And I've adapted by doing that as well. Certain times, if I say, hey, I need you to do this, if he doesn't understand me right away, I'll reword it. And I find myself, even without even realizing it subconsciously, I do it all the time. Meeting him where he's at. And then just really sitting back and looking where he came from, looking at his progress. There was a time where I didn't know if he would be speaking in full sentences. And we're here. Are the sentences always structured correctly? No. Do I always understand what he's saying? Also, no. But he is talking, and that is worth celebrating. And again, meeting him where he's at. There are wins. And I know there are challenging and there are rough days, but there are also days and moments worth celebrating. As moms, that is the one thing that we can do so well is celebrating the small things. Because they are worth celebrating. Riding his bike, tying his shoes, when I first brought those to him. And we know with our children, fine motor skills, gross motor skills, it can be difficult. And he was able to do it on his own time. Did it take a lot longer than I originally thought when I first brought this to him? Yes, it did. But when I tell you, I cried when he finally figured it out. It was years later, but he did it, and I was so, so proud of him. That pride that was just like oozing out of me, I was I was crying because that was something that he worked very hard on. And I was able to meet him where he was. But the hardest part for me was not accepting that he had autism. That wasn't the hardest. Honestly, the hardest part was accepting the fact that my life now and will look different than I originally thought it would. That was that was a hard one. And some of it is due to expectations, some of it is how continuous the demands are, the day-to-day, what the day-to-day looks like, and then also the emotional weight. But expectations, that that is a big one. That was a big one, and it started very, very early. And I want to be clear here now. When I say expectations, I don't mean what I am looking for out of my child. That is not what I mean. I'm referring to what I expected motherhood to be like. My vision when I was pregnant, the future hopes and the things that I looked forward to when I thought that my reality was going to be different from what it is now. That is what I mean when I say expectations. And when those expectations change, I believe it's only fair to understand that grief does follow. At least it did for me. And I want to stress that because people outside of our world, I think they do assume that when you mean and when you say grief, that rejection is in play. Like you're rejecting your child. And that's not the case. That's not the case. In reality, a lot of us are grieving, not being able to hear our children or our child say, I love you. I mentioned that earlier. That is something that you grieve. That is something that you are sad about. Or not being able to take your daughter to cheerleading and having to take them to therapies instead, or soccer or football, or you know, being able to not being able to just watch your child communicate and interact with other children without you being there to guide them through. So worrying about your child in social situations, there's so many things that I didn't even list. There's so many things that we grieve that a lot of other parents get to experience or they take for granted. And to be honest with you, and this is very important that I say this because I needed to hear this during my, I needed to hear this early on during those initial stages of grief. I think acceptance and grief, I believe that they can coexist without you having to feel shame. I believe that they can coexist and you still accept your child. So an example would be if you're out and about and you're walking through the store, I don't know, you're anywhere, and you see a child or you see a family, and they're able to shop together and they're laughing and they're playing, and then you think back to your child, and you know how how hard and how challenging it is getting them out without worrying about if it's going to be too loud in the store, without worrying about if they're gonna be overstimulated by all of the people. And then seeing that and comparing, because comparing is sh a tricky one. But you see that and you compare, and then you start to feel sad. And then depending on where you are in that grief cycle or in that grief stage, you start questioning yourself. And you're like, wait, I thought I was good. Why am I feeling this? I believe that you can still have those moments where you grieve something, but you're still moving forward with it. And if you do have those moments, it doesn't mean that you're any less healed than you were. It just means that you are human. Just like when you grieve anything, I am two years into a chronic illness. I am grieving the life that I thought that I had. I am moving forward, but I still have moments. That is grief. You're still going to have moments. It is perfectly okay and acceptable to still feel little twinges of disappointment and sadness occasionally. Now, the only thing is, is when it starts to become problematic and toxic, that is when it can be an issue. So if you continuously begin to feel resentment or envy or jealousy, or if it's weighing you down, at that point, maybe it's time to do a little soul searching, or possibly considering speaking with a counselor or therapy. Hell, I need it. I know I need therapy. I highly recommend it. And I need to take my own advice here. Do not feel bad for feeling what you feel. And the crazy part about it all, at least I can say, is when you are either working through it or feel like you have progressed through it, then the guilt kind of seeps in. At least for me, I start to feel guilty for feeling the feelings that I am feeling. I feel guilty for feeling grief. Being a mom, there is this view of us that every stage and every part of motherhood we are supposed to love. It is supposed to come naturally. It is supposed to be easy. So when we have to go through the day-to-day or feel feelings that are surrounded by our children having autism, when we have that, we feel guilty for feeling what we feel because those are not pleasant emotions. And I think society believes that when you have unpleasant emotions surrounding motherhood, that it is frowned upon, that you are a bad mother. But what society doesn't understand is what we do is very, very difficult. It is challenging. It is emotionally draining. And I think we should be given grace to feel, invent, and just sit and be. Just let us be. It doesn't make us any less of a good mom. It doesn't mean we love our children any less. It just means that we again are human. But that guilt definitely hits hard. It does. And it doesn't help when you look online, especially like on Instagram or TikTok, and I know you know what I'm talking about. And you see those moms that are like so well put together, and their children are walking around and they're so well mannered, and they're like the epitome of perfection when it comes to being raising a child on the spectrum. And then they say things like, Oh, autism has made me a better mom. It has made me a better person, it has made me better. And that may be the case because, in a lot of ways, I can I could admit that autism, raising a child on the spectrum, has made me a better human. It has given me perspective, and it has given me a sense of humility that I did not have before. But when you're elbow deep in parenting and you just finished with a meltdown at a grocery store and you're on your phone scrolling just to decompress, and you come across someone saying that, you cannot relate. And to be completely honest with you, you don't want to hear it. I don't want to hear that. But understanding that this mom who is saying this may be in a different stage of her process than you are. And you cannot compare. Again, comparison is tricky. It is. I should have taken those big old pills that I could hardly keep down or even get down for that matter, because I didn't get enough folate or folic acid. That was it. Maybe it was the cool ranch Doritos I was craving. It was one bag too many. You know, that's got all the chemicals and dyes, the reds, the blues, all of that, that is where my mind was. It was reeling, it was spinning. And that is why it is so dangerous for me, in my opinion. And I don't want to get on a tangent about this, but I feel so very strongly about it. But that is why it is so dangerous when you have people that are so far detached from our reality that come down and say things and make narratives such as Tylenol causes autism. So now you're telling me that just about the only thing that we can use for pain medicinally during pregnancy was why my child has autism. It's my fault. I shouldn't have taken this. And now we know that there is no correlation between the two. I never thought there was, but for very impressionable mothers who feel desperate and are in the trenches of all of this with no type of guidance, that is that is extremely problematic. And I'm the type of person, and this is just with life, this isn't just with this situation, but in order for me to understand something and move on from it, I have to figure out the why behind it. I do. And I had to. But it got to a point. It really got to a point, and I arrived at what does it matter? Because it doesn't. AJ is here, he is amazing, he is beautiful, he is hilarious, I love him, and nothing will change that. He has autism, yes. He does. But let's focus on how to make him happy, how to make him comfortable, and figure out what we can do, resources we can give him to make him as functional as possible for the future. That is where I had to get to. That is the point I had to get to. Because blaming yourself doesn't change anything. It doesn't change anything. And to be quite honest, it's doing yourself a disservice. It is more stress on you, and it just the emotions continue to pile. You shouldn't do that because it's not your fault. And I want to go back to the word that I just said, functional. And I want to underline that because functional looks different for every person and every child with autism. But when I think of functional, my thoughts kind of shoot to the future. And my next question is will he be able to function without me? Can he function without me? And that is another part of my grief because it kind of morphs into a whole another thing. I have to accept that my child will more than likely have to live with me for the rest of my life. Yes, I know that there are exceptions. You know, they have programs, they have wonderful programs, but I've seen people say that autism isn't just in children, and it's not. What happens when they get to be adults? I see a lot of support around children, and rightfully so. I get it. You want to support them as much as you can when they are little, but what does that support look like as you age out of some of those systems? As you get older. And that is a grief and a worry, a fear, coming back to that word, that I hold in my heart. That is an expectation that I have to shift. And my dad always mentioned this analogy when I was growing up. He compared raising a child almost to teaching them how to ride a bike. And I hope I am not butchering this. Maybe I am. I'm gonna explain this as close to the way he did, as I remember. But when your child is young and you're teaching them how to ride a bike, you kind of guide them. And this is riding a bike with no training wheels, teaching them how to ride a bike with no training wheels. When they're young, you kind of hold on to them and help them balance as they pedal. And you have them steer, but you're guiding them and you're holding them. And then as they get older, you kind of loosen up a bit. They still need you, yes. And you grip them a little bit on the side as they need it. If they fall or if they wiggle or wobble a little bit, you clutch them a little bit tighter so that they know that they are secure. But then as they get older and they're confident and they can ride by themselves, you let them go. And you know that they've got it. That is not what it's going to be like for me. I will always have those hands to guide him. I will loosen as needed as he masters things, and I will tighten as challenges come around him for security and confidence, but I grieve the fact that I don't know what the future is going to look like for him. Will he drive? What will adulthood look like for him? Will his limitations even prevent him from living a fulfilling life? And I don't even have to go that far. I mean, even as early as middle school, that is coming up soon. And y'all, I am terrified. I'm terrified of what that transition is going to look like for him as he's getting older. Kids can be so cruel. I remember how hard middle school was for me. And I'm I'm afraid. And then after I'm done asking these questions, what is the future gonna look like? And then all of these smaller questions, I get sad that I even have to ask them. But the one thing that will never change is I will always fight for him. And I'm confident in myself as a mother that I will always fight for him. I will be there for him every step of the way, every step from now until I can't anymore. Will middle school be hard? Probably. But guess who's going to be there? Me. And we have this relationship where even if I have to pull the information out of him, and he talks to me, even if it takes two hours, three hours, which it has in the past, I'll watch him walk out of my room, and it I can visibly see the weight lifted off. And that gives me relief. I will always be there for him. And that is the one thing that I can count on, that I've got him. And as mothers, as mama bears, as protective moms, we got it. Is it hard? Yes. Are we nervous? Yes. But we've got it. And like I said, when I sit and think about the fact that I have to think about those things, when I get sad, it makes me feel less relatable. I don't know about you, but I feel like other moms just don't get it. You know, I feel like nobody can relate to me. And it's a lonely feeling. You know, that that isolation where, and it's almost an illusion, almost like I'm the only one going through this. And we're not. You're not. I'm not. But it feels like it. It's an illusion. It is our mind working against us. We're the only ones in the world going through this. It was a hard thing for me giving certain friends updates. And it was only a couple because there were only a few that really cared, honestly. And you know how that goes. You lose friends with this. It happens. It's hard. It sucks. But when my friends would ask, How are you doing? Oh, my son or my daughter is doing this, this, this, and this is what we're doing. And, you know, what is what is your son doing? What is AJ doing? What are some things that he's into? And I had to answer in a way that they would understand. And very early on, you know, I again assumed, I put the pieces together, but I didn't even have a concrete diagnosis. So I had to figure out how to explain that my child isn't really into what you would expect. And that was where comparison came in as well. But the one thing that I noticed, and what helped me with that, is even though it is isolating, and even though you have friends that may not fully understand, if you have friends that are sticking around that love you, they will still be there. They don't have to understand to fully be there. That is your village. And if your village is eight people, or if your village is one person, let them in. Talk to them. Don't feel like a burden because a lot of times I felt like that. I have a friend across the country and I don't like telling her things sometimes because I don't want her to think that I'm always complaining, or I feel like she won't understand. Utilize that friendship. Just because they don't understand doesn't mean that they don't care. And even with family members, it's hard. I've heard horror stories about family members. Luckily, you know, I have a very small family, and they have been supported for the most part, but even getting them to understand sometimes that you have to shift your expectations and teaching them, you know, you're you're I'm not going to be able to discipline my child the way that you think I should. Right? And then even like the worst-case scenarios where stigmas come in in families. I know in the black community, you have this very, very real sense that autism is a bad thing. Sometimes they don't want to flat out admit it. You have grandparents, uncles, aunts, great-grandparents that, oh, they're they're fine. You just gotta spank them, or, you know, all of this like ignorance surrounding autism. That is still very, very much a problem in our communities, in our family dynamics. And then if you don't feel like educating them because of whatever reason, because I don't think it's your responsibility to do that. I think that if you tell your family that your child has autism, that they should be able to do the research on their own if they want to connect with that child. So even if you don't want to re-educate them on what autism is, or even if you have and they just don't want to step up to the plate, then you have to make decisions based off of that. And that dynamic shift. There's just so much that goes into interpersonal relationships and families. There's a lot that comes along with this. And I don't really have that challenge. Again, I have wonderful parents, but watching my children in their dynamic has been hard. That sibling dynamic, my my little one only really wanting to be around AJ, and then AJ really just wanting to do his own thing and not really wanting to have anything to do with him. And it's not because he doesn't love him, because I see that love. He does love him, but they just operate differently. It is hard because the little one is wondering, well, why doesn't he want to be around me? Why doesn't he want to play with me? And AJ's like, I want my space. I want to play dinosaurs, I don't want to play anything else. It's difficult. It's difficult to navigate. It is very difficult to navigate some days. And lastly, the biggest and probably one of the hardest things for me to accept, I cannot protect him from everything that comes along with having autism. That has been very, very hard for me as somebody who is territorial and protective. The world is so much more inclusive than it used to be. I have to admit that to think of all of the things that the the people and the children that had autism. 50, 60 years ago, even I would argue sooner than that, but the things that they had to go through and experience and they were subjected to, it was a very, very dark time. So, no, we are not there, nowhere close. However, we still have a long way to go. I see things online, I see verbiage being used, and so many things that make me so upset. And to think that I don't want my child to be subjected to that. You know, I wonder as he gets older, how is he going to be treated when I'm not around? And, you know, bullying is still a very, very huge problem in schools. I don't care what they're saying. I don't care what their handbook states, I don't care what clauses they've had in there because AJ has had to deal with that. Even at a school that had an anti-bullying clause and they did nothing about it. I worry about that. Whether people will take the time that he deserves to get to know him and understand him. Let's face it, little black boys are only cute up until a certain age in society. And then if you attach something like autism that the world doesn't fully understand and sometimes they refuse to understand, I am afraid. I'm afraid of what that looks like for him in the future. And we have examples to prove why that fear exists. And then the way others just look at him while we're out and about, that bothers me still. When he stems, and he used to stem while we were out when he was little, very, very little, they will look at him like, oh, he's so cute. And then as he got older, and like I said, because it's not cute anymore, those looks turned into stares. And those stares were not approving, and it made me so angry. There's a clear difference there, and I cannot protect him from that. That makes me feel helpless. I feel helpless. But the one thing I will say through all of that, through all of the fears, through all of the apprehension, is I will never stop fighting, I will never stop protecting, and I will always be there for him. And I am confident in that. And he will always have me and his family. So if you take anything away from this conversation today about acceptance, I want you to know that duality exists. Not it can exist, it may exist, it exists. You are able to feel two completely opposite and conflicting emotions both at the same time, and it is fine. It is normal. You are human. And one more thing, I have to add to that. I have to please give yourself permission to move through this at your own pace. This is not a race. No one is keeping score. Don't let anybody police you or guilt you into feeling like you should be further along in a process than you are. You work at your own pace and it is okay. So before we wrap up today's episode, I would like to revisit that same question that I started with. What does acceptance mean to you? Did your answer change? Maybe it didn't. Either way, I really hope that this conversation gave you more clarity, or at least, if not, a gentle reminder that acceptance may not be something that happens overnight. It is a process and it may look different today than it will look tomorrow, than it did three days ago. There are no rules that tell you how you move through this. And if that is the case and you feel like you somehow managed to get right back where you started, I promise that doesn't mean that you are failing. It just means again that you are human. And please try to give yourself the same grace as you give your child. We are hard on ourselves as moms. And we deserve that much. We deserve the grace. So thank you for spending the time with me today that you have. And please make sure that you take care of yourselves. And until next time. Thank you for letting me share this with you. If you need more conversations like this, subscribe so that you're here for the next one. And if you know a mom who needs to hear this, send it her way. See you next month.