I Wasn't Wrong, The System Was: A Journey the Numbers Don't Show

There's this idea that once you ask for help, things begin to fall into place... but that's not everyone's reality.

You speak up when you're supposed to. 

You trust the professionals to do what's right.

But they don't.

Instead, you get labels that don't fit.

Explanations that fall short.

And a process thats supposed to help.. but somehow starts working against you.

In this episode, I'm breaking down what it really looked like navigating this as a Black mother. Misdiagnoses. Missed opportunities. And the reality that autism isn't always overlooked by accident. There are deeper, systemic reasons why Black and Brown children are often diagnosed with autism years later, if they're even diagnosed at all. 

This is what happens when the system gets it wrong.

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

SPEAKER_01 0:00

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 and welcome back to another episode of This Can't Be Stressed Enough. I'm your host, Jade Marie. And for the topic of today, I want to discuss for a lot of families, not all, but what the process looks like when it comes to obtaining a diagnosis, an autism diagnosis. And I don't think a lot of people understand that if you can't get your child diagnosed initially, sometimes you have to fight for it. And unfortunately, that was the reality for me when it came to getting the services that my son needed. And I want to be transparent, extremely honest with you going into this. I don't know what this is going to look like as far as my emotions. Because as I prepared for this as best as I could, started brainstorming, thinking of how I wanted to say what I needed to say, I realized that this is still very, very triggering to me years later. And it shouldn't be surprising because it was so stressful. The process was extremely long and problematic just about every step of the way. And it's crazy because I don't I don't talk about it much. But when I do talk about it to either friends or family members or whoever, they're usually left speechless. They're shocked to fully hear what I went through. And that's odd to me because this is not uncommon. It's not uncommon that we as black and brown moms and families have to jump through these hurdles just to get our children what they deserve. And just to give you a few statistics surrounding that, on average, it takes two to three years longer for our black and Hispanic children to get diagnosed with autism. Two to three years longer. And that is very alarming to me for many reasons. But for one, when you talk about early intervention, that is the difference between children getting it and not. But also, when you start to talk about things such as this, you have questions. At least I do. And the main one is why? Why are our children less likely to get diagnosed on time? So I did some digging. And one of the main factors that goes into this question is misdiagnosis. Our children are more likely to get misdiagnosed with other conditions. So that segues into well, what are those conditions? ADHD, which I'm not surprised. ADHD is very common, and I understand that a lot of the signs can overlap, but you can't deny that there's a reason why our children are more likely to get diagnosed with that. ODD, which is oppositional defiance disorder, and then an array of conduct disorders or behavioral conditions.

SPEAKER_00 3:45

Hmm.

SPEAKER_01 3:47

I wonder why. I know why. But for argument's sake, why? Because we know that they are labeling our children and they're watching them in a way that racial stereotypes are factoring in, whether they want to admit it or not. And then you have systemic issues. I've touched on this just now, racial bias and flat out racism. I am not going to sugarcoat that. Because we know what it looks like when we step into these medical settings. And unfortunately, it is no different when it comes to our children. And lastly, resources in certain areas and certain communities, they are fewer and far in between. Fortunately, now we're starting to see a lot more gaps being closed thanks to social media and awareness, but it is still a major problem in certain communities. And I don't want to forget this one as well, but girls. Girls and how their experiences are so unique that they are harder to diagnose. Not because they don't have autism, but because a lot of the systems put in place are fully against them. So as I work my way through this episode, expect fluctuations in tone, fluctuations in emotions. I don't know what you're gonna get out of me. But it is very important that we discuss this because all of these things that I have just listed are factors and reasons as to why our children are not diagnosed when they should be. All right. Now, for this episode, I think it is appropriate to start with pre-K. Like I've touched on in episode one, pre-K is around the time where I went to someone outside of a doctor for support and for help. And it is also the time where someone other than myself and my husband saw some of the things that we saw. I got into some of the behaviors in pre-K, but I didn't necessarily get into how we got AJ into pre-K because that is very, very important. So the state that we lived in at the time, like a lot of other states, from my understanding, have this program where children that have any like particular needs or delays can get in through some type of testing. And um, they can go to school at whatever public school they're zoned at. Um they can go into the pre-K program within that school. And that's exactly what I did for AJ. So took them in, they did their assessment, it was nothing too crazy. A couple weeks later, we found out that he indeed was admitted into the program based off of the criteria of speech. So he had a speech delay. And that was the very first time that I was told anything like this. It wasn't clinical, and I don't really think it was like a technical educational diagnosis, but it was something. And I classified that as a win within itself. So again, kind of like in episode one, touched on how that process went, how stressful it was on AJ, on myself, how hard it was. And then um, at some point, the teacher came up to me and said, Hey, we have where you can get him evaluated in school based off of what we're seeing. Is that something you you would want to go with? And of course I said yes. Like, absolutely. This is something that could give us some answers. This is something that could get him the support that he needs. So we went through whatever that process looked like. He met with the psychologist, he met with the speech pathologist, um, he met with the social worker from my understanding. And after a few weeks, they kind of put together their findings and we all met at the school to determine what they were going to give him support in. And I was so optimistic going into this. There's no way in the world that they could look at my son and see that he was performing and behaving in a typical way. But I was wrong. I was wrong. They sat there and they read off of their forms and their paperwork across the board. Each person spoke. He was behaving psychologically, um, appropriately, educationally. He was at grade level, and speech-wise, he was speaking in an age-appropriate way. Now, back to about three minutes ago, I specifically said he got into this program because of a speech delay, right? This is a very, very unique program. They're not going to let you in unless you have some sort of delay or um disability. And yet now they're telling me that there is nothing wrong, that is there's nothing going on with his speech. Even though I see it, his teacher seed, made no type of sense. And the version of me that was sitting in this office at this time was not the version of me that is speaking with you now. I was not the raw-rah person that I am now. I didn't have a lot to go off of. I didn't know a lot about the processes and steps. So I just took it. Did I agree with what they were telling me? Absolutely not. But I was gonna go about it another way. I wasn't gonna sit there and argue with them. So I didn't. So after that, got through the rest of the year and fast forward on to kindergarten. Big year. And unfortunately, it was COVID. So you think about kindergarten, you think about COVID, you put those together. They don't mesh. And it didn't mesh realistically either. It was hard, it was rough. You're trying to get these children who are developing social skills and all the necessary things that five and four-year-olds are supposed to be developing, and you put it on a Zoom call, essentially. But for me, the bright spot in all of that was that I got to sit at home with him. And each and every class, each and every Zoom session, I sat and I watched and I listened, and I watched how timid he was. I watched how he struggled to answer questions. I watched how he was supposed to be keeping up with certain things and he wasn't. I watched how he was being looked over and he was struggling academically. And I brought it up to the teacher from August all the way through December, about three to four times. And each time I was met with, he will get it. I was met with this is the first time they've done kindergarten. This is not abnormal for them to struggle through certain steps. It is okay. But her tune changed right around, I will say, January, February. And that's when the urgency kind of kicked in. She started to act a little bit more concerned. We need to start intervention. I'm gonna collect some more data and then we can start it. Because of course it wasn't instant, right? Of course it wasn't. Let's just go ahead and get him into intervention. They had to collect more data, a lot more watch and see and all of the things. So, to make a long story short, we are approaching the end of the school year. And I wanted to get him assessed again. This is the same school that he went to pre-K and I knew that they dropped the ball on this. And I wanted to go through that process again. But unfortunately, I was told that we wouldn't be able to go through the necessary steps and get him to that point where he's being assessed and evaluated again by the end of the year. It would have to be picked up the next school year. So I was frustrated. I'm like, well, what do I do over the summer? What am I supposed to do? But she reassured me, even though she wasn't going to be there the next year, even though the principal wasn't going to be there the next year, and I think you know where I'm going with this. She reassured me that we could pick up this process exactly where we left off. So, taking a brief pause from that, in the background of all of that that was going on through that academic year, I was in the process of getting him in with a psychologist in the area. The psychologist that my actually my husband, I can't, I have to give him his credit here, he found her. And um, she was well known in the area for working with children and adolescents on the spectrum, very respectable. Um, everybody was trying to get in with her. So we we were able to. Very, very excited. And the day of the evaluation, and I'm gonna kind of explain how this goes for anybody who hasn't gone through this yet. Um, so you bring your child in, the evaluation process lasts several hours, and it's usually not super mind-consuming for the child. It usually looks like a form of play most of the time. Now, when they start doing like the academic assessments, you know, there's there's some brain power that'll be used there, but they typically say, at least AJ for them from my understanding, said he had a good time. It was just fun for him. And over the span of a few days, they perform these tests. I don't remember all of the testing material that they used. I do remember ADOS. That was one of the ones that was very popular from my understanding and was used for AJ. And they ask him tons of questions. They will ask you tons of questions. The questions can be quite invasive. The questions on the paperwork can be quite invasive, down to how you birthed your child. Was it a cesarean? Was it not a cesarean? Like it, they get up in your business quite a bit. But we went through that process. We went through that, and a few weeks went by and we meet over soon to discuss her findings. And as I'm logging into Zoom, I'm still very, very optimistic here. I'm looking forward to someone finally validating everything that I have been seeing over the course of the last few years. Somebody's finally gonna give me what I need to get my son the help that he deserves. But as she started talking, and as I was listening to her, I could kind of sense exactly where she was going. And it wasn't the direction that I wanted it to go. She started talking about hyperactivity, which wasn't really something we discussed as being a major concern. She started saying other buzzwords that weren't aligning with what I was seeing. And ultimately, she diagnosed him with ADHD and a generalized speech disorder. Now, ADHD is one of those things where it overlaps in signs and symptoms a lot with autism. And that was one of the things that I saw when doing my research to be one of those going back and forth. I went back and forth with it quite a bit, trying to figure out if that was indeed what I was seeing within AJ. But prior to this meeting, at some point before that, I knew it wasn't. I knew there were so many other things that I was seeing that just did not align with the ADHD diagnosis. And I listened to her talk. And at some point, I kind of just zoned out. I'm not even gonna lie to you. My husband was sitting next to me, and I know that he was able to kind of digest it a little bit better, but this was a misdiagnosis, and I knew it then, and I knew what this meant for AJ. This was yet another year of him not getting services. This was another year of me watching him struggle. This was another year of me struggling to help him. And I kind of zoned back into the conversation when she mentioned medication. And at that point, I kind of had to cut her off and ask, I understand what you're saying as far as the ADHD diagnosis, but that doesn't explain the toe walking, that doesn't explain being afraid of loud noises, that doesn't explain the food aversions and the eating habits that we are having to work through, that even the pediatricians are not giving me much information on. And this woman said to me in this very condescending tone, and before I go any further, yes, yes, she was. If you know, you know, yes, she was. But in this very condescending, passive-aggressive tone, she said, Well, if you would spend more time with him and sit and eat as a family, then a lot of those eating and food aversions should resolve on its own. And I felt my ears getting hot. Oh, I knew at that point. I knew what she was doing. That was very much a microaggression because yes, we talked about and discussed family dynamics, but not at any point did I suggest or discuss with her how we sat and ate dinner. I spent up until this point, every day, up until pre-K with my child. And each day we ate dinner together. How dare you even mention that? So I let her finish. We got off the call. She told us to let her know if we wanted her to prescribe any medication for the hyperactivity, which we weren't really even seeing. And that was the end of it. And I cried. At the end of that call, I cried. And it wasn't as much of a this is a misdiagnosis cry. I had already kind of worked through that a little bit during the call. But she came at me in my parenting style, almost saying that what I was doing was a reason why he was experiencing these things. She was blaming me because she couldn't diagnose him with what he needed to be diagnosed with and refused to for whatever reasoning. And I know what the reasoning was because she mentioned in the beginning of the call how truly, truly sweet he was. He was a pleasure to have. He was very nice, and all of the things that I had already been hearing about, AJ. Which is true, he is a sweet boy, but that doesn't negate the fact that he is having challenges. Now, fast forwarding to the beginning of a new school year. Remember, we're supposed to be picking up where we left off, right? I even go as far as to figuring out when the front office, not the entire school when kids go back, but the front office opens up for the year. And this was about a week or two, maybe even two or three before school starts. And I went in there. I went in there with the intent to speak with the principal, look into AJ's record, speak with whoever I needed to speak with to ensure that we would indeed start this process as soon as possible. However, when I went in there, do you know that they had nothing on file? Nothing. They had nothing. No record of the conversations that we had with I had with the teachers, no record of the intervention, no record of me wanting to get the process started, none of that was recorded. And unfortunately, the teacher was gone, couldn't contact her. Principal was also gone. They didn't even want to contact her. We were gonna have to start this process of let's watch and wait and see all over again. So I walked out of that school, I was livid. I was thinking about what options, what next steps, what am I gonna do? I went back in there a few days later to a week, I took him out. I pulled him out of school. He was not going back to school. I was gonna homeschool him. And I did just that because there's no way that school or any school in that district for that area, because at this point I have a sour taste in my mouth. You're not gonna drop the ball again. You've already messed up in pre-K and now you're messing up again. Obviously, you guys don't have it in you to do right by my child. So I'm gonna take matters into my own hands. Now, shortly after this, we moved. Different city, new start. We're starting homeschooling. I've got the curriculum ready. I've got activities, I got everything planned. I've gotten him into speech therapy. I found a speech pathologist that I could go to with no referral, found a new pediatrician. He was amazing. Guy. I was thrilled. I was happy. I was ready to rock and roll. And that's exactly what we did. Months of homeschooling, activities, following the curriculum, collecting data, and I was watching. I watched everything. I watched how he blended words. I watched how he sounded out words. I watched how he memorized things. I watched all of these things and I noticed he was struggling in a way that I wasn't able to see before because this is me actually teaching him. And regardless of the strategies I was using, regardless of the outside help I was seeking, it seemed as if, no matter what I did over the span of several months, over the span of several months, I it wasn't necessarily clicking. He had strong areas. He had amazing strengths. But the weaknesses that he had, especially around English, and I was piecing together how English and phonics were very closely related. I couldn't figure out how to teach him. And that was a gut punch to me because I had to come to the realization that I wasn't equipped to homeschool him, not in the way that he needed to learn. I didn't have the necessary tools. I didn't even have the necessary education. Because let's face it, I didn't go to college for teaching. I didn't. So it was a it was a gut punch. It it took me a while to get over it. I was hurt. I was disappointed. And we did round two of the psychological evaluation. Found a, again, this is a new city. I found a new doctor to take him to. And I did a lot of research. She was very nice. Um worked with children on the spectrum. I guess that's not saying much because the other lady did as well. Um, but I was looking forward to this, you know. We took him in, went through that same process again, the same layout. The only difference is that she wasn't really able to speak with someone at a school regarding what they were seeing and observing around peers because he was homeschooled. But I was trying to give her a lot of the data that I collected because they do a bit of like the educational um evals as well, but she didn't really seem interested and she really didn't seem to take me seriously. But that's neither here or there right now. We went through the process, met over Zoom for another call, and I was, I would say cautiously optimistic going into this. I kept in the back of my mind what happened in the first one, but I didn't want to allow how that woman made me feel to cloud what was in front of me now. This was a new woman, she seemed nice, she seemed observant when she was interacting with AJ. So I wanted to wait to see how it played out. And I was very, very surprised, and not in a good way either. Um, she diagnosed him with a stereotypical movement disorder, which I had never heard of, and a mixed expressive and receptive language disorder. That one spot on. I would give that was spot on. But that movement disorder, I didn't quite understand it. But when she started to explain why, I got it. She hyperfocused on the stemming behaviors, the toe walking, a lot of the like stemming behaviors he did while he would play. It seemed as if that was the only thing she saw, which honestly may have been, but she didn't consider anything that we had said at all. So when I asked her about the sleeping challenges we were facing and the fact that we were not getting much sleep and how he seemed to survive off of two to three hours of sleep a night, and the fact that we couldn't wash his hair because he was deathly afraid of the sound or cut it, and then the the good grief, the being afraid of loud noises, all of these other things. She couldn't answer. The only thing she said was that I could have him reevaluated in a year and that things changed. And my whole thing is nothing needed to change. I needed to know what was going on right now. Because I just didn't quite understand. I didn't get it. So I logged out of that meeting and I don't even remember, to be completely honest with you, I don't even remember how I felt after that. But I do remember shortly after that going into an emotional dive. I kind of closed myself off from everyone. This was right around the time where I just wasn't reaching out to friends as much. I went into probably, yeah, I guess I will say a bit of a depression. Um because I felt like a failure. I had gone through the school, I had gone through clinical diagnosis and evaluations twice. And I'm still sitting here, not able to help AJ. What am I doing wrong? And then not to mention the fact that I felt like an utter and complete failure for not being able to homeschool him the way that he needed. I just felt guilty. I felt completely alone because how is it that the people that I'm seeing when I'm doing this research are able to get their child diagnosed at 18 months, two years, three years old. And here he is. I I can't, what what is wrong? Am I going crazy? Now I'm starting to second guess myself. Maybe this stuff isn't that bad. Maybe spending a whole day doing hair because he can't deal with it is normal. Maybe having to wear headphones into the grocery store is normal. Maybe this is normal. And I spiraled there for a minute. The thoughts and you, Mama, you know. I know you know. I know you know what I'm talking about. Those thoughts that keep you up in the middle of the night. I was experiencing that. Those thoughts of doubt and the self-image and what you're gonna do next and the future, all of that just I was spiraling night after night after night. And out of pure desperation, I reached out to a professor, a black professor in California, all the way out in California. And I just, in an email, laid it all out what I was going through, what I had been through. I don't understand what's going on. What do she recommend that I do next? Because I am at my wit's end. And I did not expect her to respond. I didn't. But I got an email not long after asking for a call. And we we talked. She had me go over it again because she wanted me to articulate everything and she wanted to hear what I had to say. And at the end of it, she told me what I was experiencing was not abnormal, which it felt like it. It felt like I was the only one in the world who was going through this, but she said I wasn't. This was something that was common in black and brown communities. This was not rare. And she told me what to do. She told me to get AJ back in school, that they were required by law to give him the services that he needs. I asked her about a private school. She said no. And I know that a lot of people who have children on the spectrum, they love their private schools. But just because of the situation that I was in, she didn't recommend it. Because private schools are not mandated by law to follow IEPs necessarily. So she wanted me to get him back in school. She said no matter how long it took, that could be on the back burner, but get that clinical diagnosis. It didn't have to be now, but to get it eventually and to keep my head up, what I was seeing was valid and that they treat our children differently. They look at our children differently and to keep going. And I did. I did. Shortly after that, we moved again. This time we moved up north. New state. Husband got laid off. You know how that is. But we got through it. The process of moving, just as it anything is that is new for a child on the spectrum. It was hard adapting, getting acclimated, new environment, new routines. It was rough. And we had done this. This was the second time we had done this. This was taking a toll on him mentally and on me mentally and physically at this point. I was losing weight. I was stressing, and it was clearly showing. But I did not let that stop me. Hit the ground running. I did everything I had to do to get him enrolled into school. He started on a Monday. I went to that school on Friday and I said, Hey, this is what I'm seeing. My child's name is AJ. My name is Jade. I gave them the exit doc from the speech therapist that he was at. I said, he is having some speech concerns. They guaranteed me that they could get the child find process started right then and there because I had documentation of the speech challenges, which is perfect. And then everything else that I had been seeing that kind of aligned with autism, that whole same, let's wait and see. Like I knew it was coming, but I was prepared at this point. You know, this was yet again, same different day, you know. So we did the IAP process for speech, went through everything. It took a while, several weeks, but he got it. He got the speech services that he needs, and I was thrilled. This was the first time in an academic setting that he was able to get speech. And he loved his speech pathologist and it was working. But on the back end of that, while we were going through the IEP meetings and he was getting assessed in an educational setting, I was talking to his general education teacher. And I was telling her, hey, this is what we've been going through over the past several years. This is what we have been seeing. This is how we have to prepare him for his day. Please let me know if you see anything. If you could just be a little bit observ, a little bit more observant than you maybe normally would have to be. Just let me know. Whatever you have to do, just please let me know if you see anything. And she did. She did. She saw the fear of loud noises and how he has to wear headphones in the classroom when things get a little too loud. How she has to be reminded the day of, or at least a day ahead of time, if there's a fire drill coming, because he can't handle it. She had to make a completely separate task just for him to go over what's going on through their day, go from start to finish, because he has to be made aware of what his day was going to consist of. Transitions. He had to be supported in that because there was no way he was going to be able to do it alone. Even down to some of the social challenges that I didn't even know were a thing. She made me aware of that. This was the first time that somebody validated me with everything. And that process started for Child Find to get him evaluated for autism. And it looked very similarly to the process in pre-K, but this seemed a little bit more in-depth. And it also seemed like the people who we spoke with during the parent interviews, they cared aside from the psychologist, and I'll get to that. The one person that stood out the most, and I consider her an ally to this day, was the social worker. Because when we went down the list of everything that we were experiencing from infancy, and we finished, she looked at me and said, Oh my gosh, I am so sorry. And she couldn't say anything out loud because at this point he hasn't been evaluated. She couldn't just flat out say, okay, yeah, I think he has autism. She can't do that. But a lot of the things that she alluded to made me feel like she was saying, okay, I understand why this evaluation process is happening. I see you. She was basically saying, I see you and I see him. Nobody that I have interacted with before has ever made me feel that way. So fast forward to the IEP meeting. This was the IEP meeting that was gonna determine whether AJ was getting diagnosed in an educational setting with autism. And all IEP meetings looked different. I walked in there, I was stressed. I was literally, I'm not gonna lie to you, I was in there like tense because these things are so, these meetings are so intimidating. And I'm gonna get into a whole segment about IEP meetings in the future, trust me, because they are their own separate beasts. But we sit down at a table, it's a round table, and we're all there, everybody. General education teacher, psychologist, social worker, speech pathologist, myself, my husband, and the assistant principal. And they go through their formalities in the beginning, they go through their legal documents, everything that they are required to do and say, and we get to it. They go down the list of everything they see, they go down the list of everything AJ cannot do. And it's hard to listen to. Each one of those meetings, every time, it is hard to listen to. It is. But we get to the end where everyone is supposed to vote on whether they agree with the fact that he is going to be diagnosed with autism. And everyone mentions what they have observed. They go down the list, what they have seen in their setting, in their class, in their room. And it all has pieces of everything that I've seen. But no one can say whether or not they agree that it's autism. And it was the social worker that finally spoke up. And she said, You guys, each and every one of you is listing something in here that qualifies under the criteria of autism because they have a list on the board. It says autism diagnosis, and it has the criteria. And everything that they said, it met it. And she says, it all falls under this umbrella. So why can't we just say what this is? It's autism. And everyone in that room finally agreed. They finally did, except the psychologist. And when I met with her before, I got a kind of vibe, caught a vibe from her, and it wasn't, it wasn't a welcoming one. So I knew that if I was going to have any challenges, it was going to be from her. And she said that she didn't agree with it and she was going to file some sort of notice saying that she didn't. She said that because she, when she observed him for 11 minutes and 29 seconds in his classroom, that he was happy. He was able to work perfectly fine, and that she didn't see any issues. She didn't see any challenges there. Even though everyone else listed everything that they saw. And she said that she didn't want to label him, and she said that exact verbiage. She didn't want to label him with autism if he didn't have it. And we got into a back and forth. It wasn't pretty. But I left out of that meeting with an educational diagnosis. We got it. Regardless of what the psychologist said, we got the diagnosis. And I felt for the first time in years that I could breathe. This was the win of wins. We finally got it. I was able to breathe for the first time deeply. But I wasn't relieved. And I wasn't relieved because I was still coming off of that meeting. That meeting was intense. It was one of the most intense meetings up until that point, because I've got some after that that were far more intense. But up until that point, I had never experienced anything that extreme in an IEP meeting, in any type of meeting for that matter. And then shortly after that, because I had a lot of things working in the background, we found a psychologist in the area. Again, new state, new city. I was cautiously optimistic, but we were going in for the third and final evaluation. And we went in and it looked very similar to all of the other ones, except that we had a teacher on our side now who saw all the things we were seeing. And when we convened over Zoom for that final meeting for us to explain her findings, she diagnosed him clinically with autism. And at the end of that meeting, after she explained everything, she paused for a minute and she said, I want to let you know that, ooh, y'all, I'm sorry. I'm trying not to get emotional because this is this is um this is something.

SPEAKER_00 40:07

But she said, I want to let you know that you have been right this whole time.

SPEAKER_01 40:14

He does have autism, and I thank you for not giving up on him. This diagnosis will be able to give you the help and the services that he needs. And I will never forget that. I will never forget that. And it's like something broke in me after that. I whoo y'all. Sorry. I'm sorry. I'm sorry. Um I had to fight back tears in that. I was trying so hard. I may have cried. I don't even remember. I know I was fighting it hard because this emotional process, it was so emotional. It's the surface level is what you see, but it's deeper than that. It is so much deeper than that. And that day we got him diagnosed with autism. And I was able after that to get everything that he needed moving forward. And it is a shame that it took six years to get him a diagnosis. It took six long years. And it's not for a lack of trying either. Getting your child the help that they deserve should never ever be that hard. It shouldn't. And the one thing that stood out to me consistently throughout that entire process, that entire six years, was the word label. And even to this day, that word is extremely triggering. Because I either heard, we don't want to label him, and in actuality, they were, or I was hearing he is so happy and his disposition is so calm and all of these things, almost as if children with autism cannot be happy. Just the way they would say that children who present aggressively, quote unquote aggressively, have behavioral challenges. Our children don't have the space to have autism. Not our children. It has to be something else. Because if another child that is not of color or black presents that way, they're gonna get diagnosed a lot quicker because they have the freedom and the space to have those behaviors and present in that way, in a way that we do not. Our children do not. And in my opinion, I would much rather you label my child with the correct label that is going to attach the appropriate resources and the appropriate help than to not label him at all. Because let's face it, in some way or fashion, everyone is getting labeled, whether you're neurodivergent or you're neurotypical. My concern, and this is just me, get the label correct. And and this experience was just so, so eye-opening in so many ways, because it revealed how flawed the system is and all of the inconsistencies within it. Perfect example, Pre K. He got into the program because of speech, and yet a few months later, not even half a school year later, you're telling me his his speech is. Fine because it magically improved, right? No. There is an inconsistency there. There is a flaw there. You dropped the ball. And children, if this happened to AJ, I can only imagine how many other children this has happened to. I wonder. I wonder how many other children this has happened to. In another example, I have another child, my youngest. We went in for a routine, physical, routine checkup. Right around the age of two, I brought AJ with me. And in that checkup, they gave me a questionnaire for my youngest. And I'm looking at this questionnaire, it's about 10 to 12 questions. And as I'm reading it, I immediately notice what these questions are for. Because there's no, there's no like title showing you what this is for. I knew immediately what this was for. This was a this was an assessment in a questionnaire asking if I'm noticing signs of autism in my child. And for every question that I'm physically checking off no for my youngest, I am mentally circling yes for AJ. Every single one. And I walked out of there, of course, happy that the physical went well, but I am upset because why didn't I get this? Why didn't I have access to this when AJ was two, when AJ was 18 months? Where was the sad? And the better question is why isn't this a standard? Why isn't this something or some variation of this accessible in every single clinic, every single pediatric office? This needs to be mandated because it's not like autism is rare anymore. It's one in 31. One in 31 or 32 kids are being diagnosed with autism in the U.S. It's not rare. So why are we not bumping up screening tools? To me, the first line is the pediatrician's office. And to be honest with you, I see where certain states are trying. I see. You've got Georgia, um, they have the program Babies Can't Wait. Then in uh North Carolina, you have Teach. New Jersey has one. And I think Nevada, I want to say it was Nevada, is trying to make it so pediatricians can diagnose children with autism to kind of bridge that gap in wait times. So I see where, I'm seeing where people are trying to make this more widespread, but we have got to do better. We've got to figure out something because two to three years is too long. And on average, our children are being diagnosed two to three years later. So six years? That is entirely too long. And through that process, I had to pick up and move. And it wasn't me picking up and moving to get him the services, but I had to move in order to get them because I wasn't getting them wherever I was. And no one should have to move and uproot their life to get their child the help that they need. They shouldn't. And one thing that I am so glad that I did, and I recommend other moms do if they can, try to receive that educational diagnosis as well as the clinical, if you can. Because I have found and I'm still finding right now that that clinical diagnosis holds a lot of weight. It does. And I know that it is easier said than done. It is tax returns. Tax returns. I did this process three times. Thousands of dollars. I will say one of those assessments was over two grand. And you're doing that more than once. That was expensive. Super expensive. Tax returns went to assessments. Tax returns went to evaluations. Asking my parents for financial support went to evaluations. And not everyone has, not everyone has the ability to do that. And yeah, I could have attempted to go through insurance, which I did several times. However, every place that I went in, I contacted several. I mean, good grief. If I could show you the call hours, I was on the phone forever trying to get contact with people, figure out wait times, figure out if they accepted insurance, all of the things. But the places that I finally did end up getting in contact with, you're talking about wait times up to 18 months to even be seen for an evaluation for your kid. And in my eyes, AJ had already waited long enough. So if I had the means to get this diagnosis, even if I had to pay out of pocket, which we did, I'm doing it. But again, not everyone is able to do that. And it's so upsetting. I was so, so upset. Because in our society, and I was talking to my husband about this the other day, black women are looked at as angry and aggressive and confrontational. And I felt like in a lot of ways, that is what I looked like. That's how I appeared to be in front of these people. And I didn't have a choice because it was very evident to me that no one was going to help my son get what he needed, the way that I was. Nobody was going to fight for him the way that I did. And I hate that the passion that I had, because that's exactly what it is, and that's exactly what it was. The passion that I have was perceived as anger. I hate that. I hate it. Because I only wanted what was best for him. And that passion fueled me for five to six years to get what I needed to get done. And it sucks. It does suck. And one thing that was super, super challenging throughout this entire process, aside from having to manage behaviors on my own without any guidance or support outside of my husband, was when you're doing this, when you're going through this fight and trying to do the research and get your child what they need, it's not like life stops. It's not like at any point you don't have any more responsibilities. It's not like you don't have priorities. You still have to maintain the life around you and get everything else done. So what I was doing was just an additional layer of stress on top of everything else, on top of raising children and just trying to be a functional human being. And then I don't know how, if I didn't have the internet, to be completely honest with you, I don't know how I would have gotten through it. Thank God for Google, because that is how I was able to educate myself on what autism was and how I was able to accurately and effectively advocate for him. Because I do want to touch on something that is not getting brought up enough. And in America, autism affects quite a lot of people. I mean, statistically speaking, we can see that. You have one in 31. Children are being diagnosed a year. It's stretching across all demographics, and we cannot deny that. But the one area, the one demographic that I'm not seeing enough representation in is in our girls. Our black and our brown girls are omitted from a lot of these conversations, such as these. And my heart truly, truly goes out to them because if you're looking at the numbers, it's saying that boys are being diagnosed more than girls. And they are, but that doesn't mean that more boys have autism than girls do. It simply means that testing and evaluation criteria isn't meeting girls where they are. And that is the case because we know, we know that when it comes to this and these diagnostic criteria and the testing that they use, a lot of that is built and modeled after young white boys. And our girls don't fit into that mold. They do not behave, they do not present, and they do not show up like young white boys. So of course, when they're being evaluated, when they're being observed, they're going to be looked over, passed over, completely ignored. It is happening. And that sucks because just like with any other child that doesn't have access to the support that they need, our little girls are struggling. Our girls are struggling. And it doesn't help that they are required to mask to the point where it feels uncomfortable for them because of society and social norms, they're required to look a certain way. They're required to behave and act a certain way. But when they don't, they're labeled as problematic with attitudes or standoffish or just shy. When a lot of them, they, they, they just have autism. And one thing that I am seeing more of now than ever are young women who grew up and they had children of their own. And their children got diagnosed with autism. And it forced them as moms to take a good look in the mirror and say, okay, a lot of the things that I'm seeing in my child, I see in myself. It's literally like they're seeing themselves staring back at them. And it's unfortunate that they didn't get the same support that they are giving their children. It is amazing as women how we are breaking some of these cycles. But where was the support for us when we needed it? You know? And the last thing that I want to talk about, and I want to put emphasis on this because as moms and as a mom who is talking to you as well, we don't pour enough into ourselves. We pour a lot into the people around us. We pour a lot and give a lot to our children. But when you go through this process, and even if you're not trying to obtain a diagnosis, you're just going through the day in and day out, you go through, or at least I can speak for myself, you go through these moments where you're you lose yourself. Like I said, when after I got that second diagnosis, the doubt that crept into my mind was so heavy that it had me questioning everything about myself. And as autism moms, I think we go through that quite a bit. We question whether we are enough. And I want to tell you you are enough. Do not feel guilty. Do not feel like a failure. Because it's not none of this is your fault. None of it is. Even now, years later, I still think about it. I still think about all the time that was lost because I was advocating so hard, and I have to rewire my thinking in the moment. It is not my fault. And we are good mothers. What we do is difficult. What we do is hard, but it is so rewarding. And I would do it all over again if I had to, without question. No hesitation. I would do it again. So this episode was heavy. I know. But again, just like the previous one, it was necessary. But the next one, it's gonna be a little different. I want to invite another mom, not for necessarily an interview, but I want to just talk. I want to just sit and talk. You guys have heard my perspective, and it is just one out of the entire spectrum. I want to talk to other moms and another mom whose dream may look completely different from mine. And on the next episode, that is exactly what I intend to do. And again, I appreciate you sitting and listening to this for the past hour. I really do. And I look forward to sharing this space with you again next month. 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.