[00:00:00] Hi everyone. I am Dr. Kim Pinckney and I’m the proud mom of a neurodivergent son who is now a teenager. I can’t even believe it. I’m also an instructional designer, performance improvement consultant and advocate for inclusive education. I help parents navigate through special education systems and all the things.
I was thrilled when Andrea from TCS asked me to do a video for you all that really talks about what I’ve learned along the way, especially when it comes to navigating therapies, which we know are so vital for the outcomes and success and comfort and ultimate achievement of our kiddos.
So I’m happy to present to you finding your therapeutic village and navigating therapies at the intersections of neurodiversity and race. So first I’d like to just talk about my journey. I can remember being a new first time mom, [00:01:00] not really knowing what to expect at all. But you know, I was a former teacher.
I have an education background. I taught middle school Spanish. So I was a language person. And I was also, at the time, when I had my son, a doctoral student. And we went through, you know, several screenings like you do at the pediatrician’s office. And you know, even though I had some budding concerns about maybe some language delays, not so sure if my son was recognizing his name, things like that, I was really just kind of brushed off and told “Nah, that’s sort of typical of boys.” My son did go to a preschool, ’cause I worked, you know, full-time and was also a graduate student. And his dad, at the time, was a TV news producer, so we had busy lives. And they had noticed some things that, oh, we didn’t realize that Gavin, your son, knew his colors.
But he just would call them out from across the room, but [00:02:00] not really respond when we were asking, “Hey, what color is this?” So I did reach out to early intervention services at our county level at the time we were in Maryland, at 18 months and then again at two and a half years old. No real diagnoses.
Some kind of like, “Eh, we can give him some services,” but they were like, ” He’s, you know, such a personable kid and was kind of smiling and flirting and saying things like uhoh.” And so that was really that, that was all we were kind of given. And we even then went, I went to two separate developmental pediatricians, who came highly recommended.
And I remember, you know, one telling me “This is a handsome kid” and nothing really came out of all these appointments. Right? And so that left me with feeling like a complete failure, right? I knew that I was a first time mom and didn’t really know what I was doing, and I felt like, well. If this is just, no real diagnosis is [00:03:00] going on and I’m an educator, well then this must be my fault.
Right? And that guilt and that shame that I felt really did take over in a lot of ways. Finally, I went to the autism center, specifically within the medical practice that I was seeing some other developmental pediatricians, in essence, kind of went above their head and made an appointment and then.
At four and a half years old, I remember the day crystal clear, it was November 16th, 2016. After 45 minutes, my son received a diagnosis of autism and at that point he was four and a half years old. So this was a journey that started. I officially started asking some questions when he was 18 months old, and it was not until he was four and a half that he got this diagnosis.
One of the things, that I think that story really reflects is the experience of unfortunately many black and brown families. Especially at the time, research showed differences in the rates and [00:04:00] ages of diagnoses for autism spectr disorder among racial and ethnic groups. So due to bias, misinterpretations, misclassifying behaviors of black and brown people, stigma, diagnoses, all of those things, distrust of the medical professionals, perhaps sometimes, a lack of access to resources, any combination of those things really led to some diagnoses disparities at the time. Such that brown and black children were really diagnosed less often and then later in life. I was fortunate that my son was able to be diagnosed at four and a half, which all things considered is relatively early. But when you think about me starting to ask questions at 18 months and then not receiving a diagnosis until he was four and a half, that is a long time to wait.
It is a long time to wait. When I felt then like a failure that whole time, it’s a long time to wait. Knowing what I know now in terms of therapies that he was essentially denied [00:05:00] because he didn’t have a diagnosis, supports, accommodations that were then denied because he didn’t have a diagnosis — so these are the things that sort of make my blood boil, and one of those things we have to be aware of in this community. So with all that being said, I’ve had to navigate through a lot in this journey with my kiddo and all the things I’ve learned along the way. So I do have some tips for you all, that I’d like to just share, and these are things that have worked for me.
These are also tips that I usually share with other people as I’m working with them. The first is to breathe and love your child. The second is to filter out the noise. Third is seek culturally and neurodiversity affirming care. And the fourth is balance. I’m gonna spend some time talking about each of these in detail.
So when I say breathe and love your child, let’s take a pause here for a second. Humor me as I invite you to [00:06:00] enter into this balloon breath exercise. As you see this circle on the screen expand, I would like you to inhale and as it gets smaller, exhale, we’re gonna do this three times.
So notice how you feel. Hopefully a little more grounded, a little more present in your body. Maybe even a little more relaxed right? That’s the power of breath, and that is something that is crucial, to sustaining ourselves, to getting ourselves ready for the task at hand, for sustaining us on the journey and breath work like this is also something that’s very important for us to model for our [00:07:00] kiddos, right?
Modeling how we can come back to our breath, get centered, get grounded, how we can regulate ourselves. It’s really important for us to do that and modeling it for our kiddos, and then also teach that to them as well. ’cause when we’re grounded, I have found when I’m grounded, when I’m able to focus and concentrate and just sort of be more present, the more I have energy and space to then love my child, the more I have energy and space to meet my kiddo where he is, the more I have that energy and space to show up in the way that he needs.
So breath is just that powerful. It is, it’s actually revolutionary. It is sustaining, fulfilling, and super important, and essential for the work that we have to do along this journey.
Now the loving our kiddo part, and this may take a second to come up, but you know, what I have found is that [00:08:00] connection is really important and so once you’re grounded and have regulated yourself, you can then really focus on your child and meeting them where they are. I’ve found personally, when I was looking for ways to connect with my kiddo and wondering how to go about that, when, you know, if that the time he wasn’t necessarily responding to his name or, you know, really struggling with how to really connect, I found that when I made a shift from asking all these questions. One simple thing we can do is to stop asking questions, to then notice what they notice. I noticed what my son was noticing. I narrated what I saw him doing, what I saw him observing. I shared space with him in a non-intrusive way. Essentially, I was entering his world.
And so we were both able to relax and to sharing some [00:09:00] time, enjoying time together, and it didn’t look like how I thought it was gonna look, right. It’s not this question, “Hey, what do you wanna be when you grow up?” What did this and that and the other? It was really just about being and pausing, being present and sharing space, and really entering his world.
And I found out it’s a pretty cool place to be, right? There are things that my son notices that I would never have noticed. For example, my son, he can somehow see power lines like electrical power lines, miles and miles away, and point them out and marvel at them. I never would’ve thought twice about a power line.
Right? And now we have these sort of like scavenger hunts when we were on road trips. It’s amazing. And that opens up this trust right? Entering his world allowed me to establish trust with him, establish a safe place with him. I’m then entering his world, and there would become different windows of time and opportunities where then he could also enter mine and I could bring [00:10:00] up things that were important to me.
But this is the foundation, of relationships and navigating therapies because it’s through that connection first. That really helps to set the stage for everything else you’re going to have to do. It was not an accident that I focus on connection first before any of these other tips. The connection you form with your child is pivotal in helping to filter out the noise.
And what do I mean by that? One thing I know for sure along the journey there were certainly lots of people with lots of opinions. People that you know or that I knew were in denial, they may be in denial for your case as well. People who you don’t know as well may pass judgment on you and even your child.
Even therapeutic providers have their own biases, their own assumptions and approaches. There’s gonna be a lot of noise. I can remember people in my nuclear family, right, who without a [00:11:00] shadow of a doubt, love me without a shadow of a doubt, love my son, and thought that when I was expressing some concerns and seeking out different evaluations that I was sort of over exaggerating or being overly sensitive.
So that made it hard, right? When people that you love and that you trust are saying, oh, there’s nothing to worry about, and it’s not. That’s just offered in that way. It’s hard to proceed. Right. But I had to listen to my gut. That’s some of the types of noise you may have to filter out.
When it came to different therapeutic providers. Like I had mentioned in the diagnoses story that I was sharing earlier, there were developmental pediatricians that were like, “he’s a handsome guy.” Yep. He sure is. And what does that have to do with him getting a diagnosis?
Right. So the noise of “he’s handsome, don’t worry about it,” is not helpful. Right. There was a provider that said to me, “Just be careful of how he’s lining things up.” And okay, what does [00:12:00] that mean, right? Like lining things up is an okay thing to do. You can do that. It’s not hurting anyone. But also because I’m not getting that diagnosis, I’m being denied therapies for my son, right?
Another provider said there’s just so many people getting diagnosed, so we have to be really careful about how we’re giving them out. Okay? So, because other people and parents are getting more and more informed, and diagnoses rates are rising, my son can’t get a diagnosis. And again, it’s a part of that delay that we had in obtaining those services.
I also mentioned people that don’t know you very well. I can distinctly remember, a time when I took my son to a fast food restaurant, that has a play area that he loved frequently. And at that time, this is before we figured out exactly what worked for us. Transitions were hard, especially when you were going from a preferred activity to a lesser preferred or non-preferred activity.
And so at the time, I gave him, a countdown, a warning, all the things, and then it was time to go. [00:13:00] And my son was like, “Nope, I’m having fun. I’m staying right here.” And I called out to him all of these things. I could feel the eyes of the other parents on me. And I ended up having to go in to this sort of play area, climbing through and up the steps and all the things and retrieve my son. There was a lot of judgment. I could feel it from other parents. And they were just like, “oh, you know, my child comes as soon as I ask them to come.” Well, that great. That’s not my experience.
We have some other things we’re dealing with. But again, the guilt, the shame, all of those things that at times I would let it paralyze me, right? That’s the type of noise that you may have to filter out, and I think it’s harder to do that without having a connection with your kiddo, without getting to know them first and understanding who they are and understanding what your call is to be their parent.
So, the third piece of advice deals with seeking culturally and [00:14:00] neurodiversity affirming care. So, culturally affirming, just refers to practices, environments, approaches that actively recognize, validate, celebrate, and support an individual’s cultural identity, heritage, and lived experience. It goes beyond simply being aware of or tolerant of cultural differences, sensitivities and competence.
Instead, it involves a proactive and positive stance that seeks to leverage cultural strengths and foster a sense of belonging. Right. That’s so important, especially as we consider navigating these systems as black and brown people. We certainly want to be made to feel like we are welcome, that our culture is valued, that we are not being asked to fit inside some other box just to receive care.
And that can be difficult. Neurodiversity-affirming really refers to people and practices that understand that neurodiversity itself [00:15:00] is a naturally occurring thing, not necessarily something that always needs to be fixed, right? That this is just a part of the human experience, that instead of seeing a stim as something that is different, that needs to be stopped and corrected, really understanding about how that really works to support the person, the individual, as a part of who they are and allowing them to navigate the world and feel safe and comfortable. Right? It’s things like being aware of masking and not considering that to be a good thing, but understanding the harm that can do to a neurodivergent individual, not forcing them to fit inside a box.
Again, it’s really being about, it’s really about supporting people as they are, as they show up and having a strengths-based approach, right? Leveraging strength so that we can work on other things that really need to be worked on. That’s the crux of it. So what are some of the ways in which we can make sure we’re seeking that culturally and neurodiversity affirming care?[00:16:00]
One of those methods is to really seek out representation in your therapeutic providers. And what I mean by that is, is having a person of color, a provider of color, important to you? If that’s important to you, seek that out. Right? You can do different filters and searches, through your insurance companies.
There are websites that can help connect you with therapeutic practitioners of color. That is absolutely something you can do. The same thing with, you know, seeking out neurodivergent providers. Right now there’s lots of providers who are actually autistic or neurodivergent in some way, maybe having ADHD or something else along within the neurodivergent sort of movement.
So if that’s important to seek that out. But representation is something that is key. I’ve found that making sure that my son has therapeutic providers that reflect him in certain ways, whether it be that we have sought out, you know, actually autistic providers or providers of color, has been a way right to help navigate that piece of it.
But that’s not the only way. [00:17:00] You also should feel empowered to ask questions and ask questions frequently of any and all providers that are going to be working with your kiddo. So one of those questions that I have asked in the past, I’ll share them with you. So what training or professional development have you undertaken related to being neurodiversity affirming?
You can just ask that question and see how not only see what they say in response, but how they respond. Does the question make them uncomfortable? Do they have a good answer? Right? Are they able to say, “Hey, this is what neurodiversity means to me and this is how I ensure that we are being affirming in that way.”
How do you ensure that your assessment tools and methods are culturally sensitive and don’t lead to misdiagnoses or misinterpretation? Right. Making sure that, for example, if there are certain cultural practices that are showing up for your kiddo when they’re being evaluated, you can explain that to the evaluator so that it’s not misinterpreted in another [00:18:00] way.
In some cultures, it is disrespectful, right? To look an elder in the eye. And in the neurodiversity community, for some people that’s really harmful and hurts and overwhelming, to their sensory system, to their body. So those are all things that practitioners need to understand and that we can ask those questions about how they interpret those things.
How do you address autistic traits, like stimming, special interests, and different communication styles, right? If a stim is not harmful to the individual or others, but it is helpful to the neurodivergent individual and helping to keep them regulated. What’s the problem? So see how that practitioner handles that special interest.
Are we calling those things obsessions or are we acknowledging that we all have interests that we like to focus on? And then different communication styles. If someone is nonverbal, does that mean they don’t understand? Does that mean that we don’t help support them in communicating their needs, whether it be through AAC devices or letter [00:19:00] boards?
All of those things are important. How do you incorporate families, values, beliefs, and goals into the assessment and treatment planning process? What is your perspective on masking in autistic individuals and how do you address it in your practice? Again, I wanna just foot stomp that masking is something that can be very harmful to an individual. It can help them get through their day, in terms of being accepted by neurotypicals. But it’s very harmful to the individual. So we need to make sure that our practitioners are helping our kiddos navigate that. “Can you give me example of how you’ve adapted a treatment plan to reflect a family’s cultural background or traditions?”
Those are all the types of questions you can be asking of providers, and it doesn’t necessarily mean that you have to find a provider that either looks like you and your family or that is neurodivergent. They just have to be able to sort of address these questions in a way that makes sense to you.
One of the things that I’ll mention an example. One of the reasons why I love Andrea at TCS so much [00:20:00] I was able to ask her, I mentioned to her that my son was really struggling, with lotion, right? It was cold in the winter time, didn’t like the feel of it, didn’t like the spreading of it on his body.
And so I mentioned this to her, but I said, “Hey, you know, we are a family of color. We are not gonna, I’m not gonna have my son out here ashy. And all of those things like so lotion or something that is giving us that effect is really going to be important. Is there something we can do with you as an occupational therapist to help navigate that?”
And she took it upon herself, did some research and found, you know, all over body balm. I didn’t even know that this existed, but essentially they’re lotion sticks, right? That Vaseline makes, and so it’s a stick. The temperature is regulated. It’s not that sort of liquidy substance that we had to then use and navigate through.
And my son to this day still uses these. So what I’m highlighting there is that this practitioner, Andrea, in this [00:21:00] example, listened to our concerns, took them to heart, knew that it was important for us and our family, and helped us find a solution that was gonna work for us, and that’s what you need, right?
That’s the type of dedication you’d wanna search for in a therapeutic provider.
Finally, you know, as you go through this, you have to really identify what your green flags are, what your beige flags are, and what your deal breaker red flags are. For my green flags for me, they include practitioners who don’t shy away from answering my questions that have a strong emphasis on continuing education and neurodiversity affirming care.
Right. And my red flags, I’ll be honest I definitely check their social media. Anyone who ever works with my child, whether that be a teacher, a therapeutic provider, what have you, I definitely check social media, check their professional and their personal profiles. Just to get a sense you know, for who is really going to be working with my kiddo in a lot of instances, in certain [00:22:00] practices of care.
They may be coming into your home, they may be working one-on-one with your child, and it’s important to know kind of, you know, what if their political affiliation and or political mores match with yours. It’s important to know if there’s anything that comes up that sort of anti-autistic, any of those things that comes up that maybe doesn’t align with your family’s values, you can consider that and you can ask for a different practitioner. That is perfectly within your right. Right. I definitely had to do that a couple of times and I went back on the dreaded waiting list. That’s just what I had to do to keep my son and my family safe.
One of the other things that I do is sort of, I’m proactive in terms of communicating my non-negotiables. So I work with my son a couple of times a year to produce a one pager. This is an older one that I got permission to share with you. But we craft a vision statement for what we’re looking [00:23:00] for his future, for the things he’s interested in.
I share his strengths, again, that strength-based approach. I share what works for him as an individual because I don’t want people to just assume, oh, this is an autistic kid, so I’m just gonna throw in all these types of accommodations or treat him in a certain way. You’ve heard the saying if you’ve met one person on the autism spectrum, you’ve met one person on the autism spectrum.
So those things that are unique for my son, I definitely share with them. Give them a summary of the IEP, and also share the things that he likes to do. And my reason for this is this is essentially an informal contract. This is our vision for our son and what we hope for his future, and these are the things that work for him.
So kind of get on board, or if you’re not able to get on board with this, and maybe you’re not the practitioner for us.
Finally, balance. And what am I? What I mean by this is consider, you know, you have to consider your finances, your health insurance, the time required to balance your own jobs and your [00:24:00] child’s therapies. And remembering that children also have a right to be children. No one is required to be in therapy 40 to 50 hours a week, even if a professional says they need to be, right.
Fun, special interests, family time are also incredibly important and really helpful and pivotal in development. Ensuring that your child has a whole life experience. Too much all at once or too much over time can negatively affect mental health and of the child, but also of everyone considered.
So there are times when you may have to say, “Hey, let’s take a break on this therapy in favor of another.” You may have to prioritize what’s your main concern at the time, right? You have to prioritize, “Hey, let’s reevaluate maybe every three to six months and see is our kiddo getting enough fun time?”
Are they getting enough time with us? Are therapies seeming to take over our lives, our mental space, or our financial space? [00:25:00] One of my colleagues, friends and and informal colleague of mine, Dr. Sarah Whelan, mentioned, you know, you can’t boil the ocean. You can’t take on the ocean at a time. You can take, you know, a cup of water and deal with that right?
Little by little, chip away at it, you can pause, you can revisit, you can reprioritize. All of that is within your rights to make sure that you have the right balance for your family. So finally, I’ll just share with you, there’s a QR code on the left. If you’d like to stay in touch with me, again, I’m Dr. Kim Pinckney, and then on the right I have a bunch of either organizations or groups, that I follow that have been really supportive, that I’ve really, learned a lot from along the way. First I will shout out COPAA, so that is a group that supports parent advocates as well as attorney advocates.
They offer training on how to be a better advocate. It’s a really, really great organization. They offer trainings and have [00:26:00] a national conference every year, and they’re just a really, really great resource in terms of advocacy. Autism Level Up is really fantastic. It’s a duo of two individuals that really focus on, you know, wherever you are when it comes to being neurodiversity affirming, there’s always a level up and they provide a lot of really, really great resources. Reimagining things that have been done in a traditional way that have been a little harmful or a lot harmful to the neurodivergent community, and really helping you wherever you are to take the next step. I follow them and they’re fantastic. Autism in Black is another fabulous organization, really led by right now an actually autistic, social worker by trade and really focused on the specific, needs, difficulties, all of that.
When it comes to being a person of color and also being on the spectrum, they offer advocacy, education, and support. [00:27:00] Not an Autism Mom, Megan Ashburn actually co-wrote, I Will Die On This Hill with Autistic Typing. They’re a great duo, but also do a lot of work to make sure that we are maintaining, being neurodiversity affirming and they’re fabulous.
Fidgets and Fries, otherwise known as Tiffany Hammond, who also is the author of A Day Without Words is another fantastic personality that I follow on social media. Meaningful Speech, I wanna shout them out because if you have a kiddo who is a Gestalt Language Processor, meaning you have a kiddo that is verbal but seems to talk in scripts, borrows language from popular shows, things they’ve watched, books or stories, chances are they are Gestalt Language Processor and Meaningful Speech, is an SLP, so a speech language pathologist run organization that really helps people understand gestalt language processing and really meet your kiddos needs where they are. [00:28:00] Finally, there’s Spectrum Support. Joy Johnson runs that and offers a lot of really great resources, she’s actually autistic as well and does a lot of great work for, autistic individuals of color and just really uplifting the work and the outcomes, right? The hope for those on the spectrum. So with that being said, thank you so much. It’s been a pleasure to share some of the things that I’ve learned with you along the way, and keep in touch. Thanks.